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Problems/needs inventory of seniors with arthritis : implications for training of care-facility staff Steven, John Mowat 1987

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PROBLEMS/NEEDS INVENTORY OF SENIORS WITH ARTHRITIS IMPLICATIONS FOR TRAINING OF CARE-FACILITY STAFF by JOHN MOWAT STEVEN B.A., The University of Guelph, 1974 B.S.W., University of British Columbia, 1986 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SOCIAL WORK in THE FACULTY OF GRADUATE STUDIES THE SCHOOL OF SOCIAL WORK We accept this thesis as conforming to the required standard THE UNIVERSITY OF June ® John Mowat BRITISH COLUMBIA 1987 Steven, 1987 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. The University of 1956 Main Mall Vancouver, Canada Department V6T 1Y3 DE-6(3/81) Abstract A problems/needs inventory enquired into special social-psychological-emotional problems experienced by seniors in care faci l i t ies, due to arthritis. The inventory was based on three questions: are there any such problems? If so, what are they? And, what could be done by facility staff to help relieve such problems? This was the f irst stage in a proposed larger project: to develop a Social Work component dealing with such special problems, in order to augment an existing staff training program, and to test, evaluate, revise and implement the complete program package. A community-based approach was used. The Department of Social Work Services at the Arthritis Society produced a listing of key areas of concern at a brainstorming session; health-care and social-service professionals were surveyed by interview or by the Delphi Technique; a seniors' arthritis support group participated in a Nominal Group Technique session; care-facility staff met to discuss relevant issues; and, data was gleaned from current literature by a content analysis method. There was general agreement that seniors in care with arthritis do have special social-psychological-emotional problems because of the disease, and also there was consistency regarding the nature of these problems. Analysis of the data led to findings that included the following propositions: A sense of self-reliance and of social integration are essential to well-being. Limitations on movement, and the effects of chronic pain and of pain medication are associated with significant social-psychologica. emotional problems among seniors in care with - i i -arthritis. Two principles of care were identified: 1) support and encourage independence; and, 2) support and encourage social integration. The propositions will be applied to the development of the content of the Social Work component of the training program. Also, many respondents made important recommendations regarding methods and format for the training program. These are included in this paper. Table of Contents Page Abstract i i Table of Contents iv Tables vi Figures vii Acknowledgements vi i i Prologue 1 Chapter One - Background and Problem Area . . . . . 2 1.1 Description of the problem area 3 1.2 Prevalence of arthritis 5 1.3 Societal awareness of, and responses to, the problem area . 7 1.4 Current issues 8 Chapter Two - Interaction of Research and Practice 13 2.1 Introduction . 14 2.2 The setting for the Practice-Research 14 2.3 Research procedures at the Arthritis Society 16 2.4 Student-Field Instructor collaboration in the project . . . 17 Chapter Three - The Research Problem 20 3.1 Issues selected for research: Rationale 21 3.2 Knowledge-building functions and conceptual models of the research 22 3.3 Other relevant research 24 3.4 The contribution of Social Work 25 3.5 Limitations of the research 26 Chapter Four - Research Design 28 4.1 Research design 29 4.2 Methods of Data Collection 32 4.3 Limitations of this overall method 40 4.4 Data analysis plan 43 4.5 Ethical Issues 45 Chapter Five - Data Summary 47 5.1 Presentation of the data 49 5.2 Convergent Analysis 61 5.3 Recommendations offered by Key Informants regarding design and presentation of the in-service 65 5.4 Remarks by Key Informants from a systems perspective . . . 68 Chapter Six - Recommendations, Propositions; Conclusions 71 6.1 Introduction 72 6.2 General Recommendations as to Methods to be used in the training program 72 - iv -Table of Contents (cont.) Page 6.3 Propositions: For the information content of the training program 74 Appendix One - Issues and questions regarding a field-practice . . . 88 Appendix Two - A Model Teaching Plan for Nursing Assistants Caring for Arthritis Patients in Ohio's Nursing Homes: Excerpts 102 Appendix Three - Letter of Approval from the Arthritis Society Research Committee 108 - v -Tables Page I The numbers of seniors (and the percentages of age cohorts in care facilities) 5 II Problems/Needs Inventory: Procedure . 30 I I I Problems/Needs Inventory: Data Sources 49 IV Summary Lists of Social-psychological-emotional problems of subject population 63-4 - vi -Figures Page Figure 1: Problems/Needs Inventory Process 45 - vii -Acknowledqements To: Mr. Patrick McGowan, Medical Social Worker The Arthritis Society (B.C. and Yukon Division) who acted as my Field Instructor; and to: Dr. John Crane, Mr. Roop Seebaran, and Dr. Nancy Waxier-Morrison at the School of Social Work, The University of British Columbia, who acted as my Thesis Committee. My sincere thanks and appreciation, for their patience, good humour, and sound guidance. - vi i i -Prologue Sometimes he couldn't believe that this was happening to him. But no one seemed to understand. Struggling with his aloneness, he remembered himself as a small boy, with a childhood illness. Fevered and frightened, he cried out for help and comfort. His legs were tangled in the sheets of his bed. A terrible oppression was crushing down on his painful body. He was helpless and afraid, and it seemed forever that no one came to help. Some days, the pain was simply gone, he would wake in the morning feeling an unbelievable lightness and freedom. He took pleasure in the people around him. He felt joy in seeing the fresh blue uniform of the nursing aide; there was something about that cloth and colour that seemed right and belonged among the good things of his l i fe . He helped the man in the next bed to find his slippers, and he gave him an arm as he moved to his chair by the window. On these days, he might read one of the books that he cared for on his table, or listen to the talk programs on the radio, enjoying hearing the news and what people were doing these days. On other days, he was just numb in body and mind. On these occasions, he might sit for hours, aware only of his drugged pain, and a vague circus of memories and imaginings, as he drifted around the borders of sleep and dreams. The Aides saw that he had good days and bad days. It seemed that when he wanted to stay in bed, he would make the excuse that it hurt when they moved him. They learned not to pay attention to his bad moods, but would do what they had to do, and then get on to the next person. They s t i l l had beds to change and baths to do before the next meal time. - 1 -2 Chapter One  Background and Problem Area 3 1.1 Description of the problem area The numbers of seniors in our communities are increasing. Projections given by the United Way (1986) are that the long term, thirty to forty year, prospect is for Canada's population to age significantly. The present proportion, of one in every ten people being over the age of sixty-five, is expected to increase by the year 2031 to one in every four. In the short term projections to 1991 in the Lower Mainland, the population sixty years and older will increase in absolute numbers by some forty thousand people over the level in 1981. As a proportion of the total population, the over-sixty group will remain about the same, at 12% of the total, to the end of the decade. The seventy-plus age group will increase by 22.8%, to become, by 1991, 8.0% of the total population. There is presently, and there will continue to be, an increase in demand for services to seniors, including residential care. The quality of care for elderly residents of care facil i t ies is an issue of importance to the residents themselves and their families, to conscientious care-givers, and to planners and administrators of services and faci l i t ies. (See various references: Shore (1979); Mechanic (1979); Wells, Singer, and Polgar (1986).) One of the common problems that affect the comfort and well-being of seniors is arthritis, with clinical manifestations of pain, stiffness, mild inflammation, and crepitus (grating in the joints). Although arthritis is usually a secondary diagnosis among care facil ity residents, it imposes seriously on the comfort and capability of many residents. The Prologue to this paper illustrates this experience. Over one hundred kinds of arthritis have been identified. The different kinds are associated with different clinical manifestations and 4 have different effects on comfort, mobility and overall capability. The focus of the present work is on the social, psychological, and emotional problems associated with arthritis, and especially the day-to-day, hands-on and personal-interactive care of seniors. For these purposes, the most common kinds of arthritis present similar, common problems. This paper will refer simply to 'arthrit is 1 . The irregularity of the pain and disability associated with the inflammatory kinds of arthritis is a complicating factor, as one cannot plan ahead for activities without the possibility of an unexpected flare-up severely limiting the ability to carry through. Often the ability to perform the most personal tasks, like washing and dressing, is unexpectedly reduced. Accompanying frustration and despair can be seen by busy staff people as another problem they must deal with as they work to complete their daily schedule of tasks. Although arthritis is not an 'old persons'' disease, but affects people from childhood through the senior years, its prevalence does increase with age. (See the studies and figures cited below.) Arthritis aggravates many of the common problems of aging. Discussions in the literature have included: the impact of arthritis on the psycho-social developmental tasks of later l ife (Blumenfield, 1986), the effects of pain and loss of easy mobility and threats to self-esteem and social relationships (Cohen, Reese, Kaplan, and Riggio, 1986), and denial, hostility, withdrawal and dependency, or, adjustment and acceptance (Muhlenkamp and Joyner, 1986). The aged, and especially those with chronic diseases, need special attention to support them in their desire for wellness. Seniors with arthritis have special problems related to their arthritis. With the unpredictable occurrence of the symptoms of pain and immobility with some kinds of arthritis, special attention and flexibil i ty is needed, in individuals and in systems. According to Key Informants in this study, for the senior with arthritis and living in a care faci l i ty, individual needs are often out of step with the schedule and routine. And staff people, with busy daily schedules to follow, have limited opportunity to adapt the system to meet individual needs. 1.2 Prevalence of arthritis Table I: The numbers of seniors (and the percentages of age-cohorts) in  care facil it ies in British Columbia and in Vancouver, by age  group (Vancouver Health Dept., Long-Term Care Program, 1986) AGE B.C. VANCOUVER 65 - 69 yrs. 1,239 (1.0%) 309 (1.4%) 70 - 74 yrs. 2,178 (2.2%) 503 (2.7%) 75 - 79 yrs. 3,305 (4.9%) 734 (5.3%) 80 - 84 yrs. 4,861 (12.1%) 1,024 (11.5%) 85 - 89 yrs. 5,162 (25.7%) 1,100 (22%) 90+ 5,351 (48.1%) 1,155 (40.1%) The trends are clear, that residents in care faci l i t ies tend to be in the higher age groups, and that in the higher age groups, a higher percentage of people are in care faci l i t ies. These trends can be compared with figures representing the increase of prevalence of arthritis with age, as follows: Radiography found Osteoarthritis (OA) in 52% of all subjects examined and in 85% of all subjects aged 55 to 64 years. (Lawrence, 1969) X-rays of hands and feet found OA in 4% of subjects aged 18 to 24 6 years, rising to 85% of subjects aged 75 to 79 years. (Roberts & Birch, 1966) A recent U.S. census abstract shows arthritis in 465 out of every 1,000 people over age 65 years, with the prevalence of arthritis increasing to coincide with a larger older populations. (U.S. Department of Commerce, 1985) The National Health Survey conducted in 1978-9 in Canada showed 48 out of every 100 persons over 65 years with arthritis; utilization of medical services increases with age as the symptoms of arthritis worsen with aging. (Lee, Heliwa, Smythe, Bombardier, and Goldsmith, 1985) In contrast with these apparent trends towards higher rates at higher age levels, a study by Waxier, MacEntee, Morrison, and Weiss (1985), by personal interview of "institutionalized elderly", found arthritis in just 17% (90 out of 532) of the subjects. But, this is consistent with Bennett, Wayne, and Bauer (1942) as they report: "There is often a disparity between radiological evidence and clinical manifestations of OA (pain on movement, stiffness). This is borne out by the fact that more than 85% of the population over the age of seventy have radiographic OA in their weight-bearing joints, with relatively few reported symptoms." (in McGowan, 1986) Osteoarthritis is the most common kind of arthritis, and its prevalence increases markedly with age. It is a common diagnosis among seniors in care. The above findings, regarding prevalence of Osteoarthritis by age, taken together with facility utilization by age, suggest a high prevalence of arthritis-related problems in general, among seniors in care faci l i t ies. However, some caution must be taken, considering the statements above on the asymptomatic nature of 7 Osteoarthritis. Given that the diagnosis of arthritis is often based on X-rays, and that the disease is often asymptomatic, the pain and disability, although severe in those who have the conditions, might in fact be rare in the overall population of seniors in care. Time constraints on this present study did not permit an investigation into the actual prevalence of arthritis symptoms, that is , the pain and the loss of ability and mobility, that are related to the psychological, social and emotional problems of seniors in care with arthritis. But, the information available, as above, suggests that arthritis is a serious and common problem among seniors in care, and an issue of concern for care-givers. This present study focuses on the social, psychological and emotional problems specific to seniors in care with arthritis, that can be dealt with by the faci l i t ies' hands-on care-givers, that is , by Care Assistants, Aides, and persons with similar responsibilities, in their daily work. 1.3 Societal awareness of, and responses to, the problem area In the general area of community services for seniors, activities include: support networks; community centre programs; local health units with programs of services to seniors, including health and wellness education and supporting groups; seniors' information and referral services; crisis lines; and a variety of home support, home visiting, counselling, and social recreation programs. In the areas of academic research and in professional and vocational training, there is a flurry of activity, as the numbers of seniors increase in our communities and there is more demand for services and 8 more funding for research and employment in the recently defined field of gerontology. There is an extensive literature on quality of care and on conditions for seniors in care. The literature includes discussion of such topics as: coping with chronic illness; self-help education; facil ity design; staff and seniors' perceptions of illness, pain and disability; life-satisfaction (measurement and achievement); psycho-social aspects of aging, and of chronic disease; psycho-social factors in planning and delivery of care; seniors' and families' involvement in planning of care; quality-of-care assessment methods; staff education and teaching needs; maintenance and rehabilitation for independent functioning; and, services planning and evaluation. Thus, within the academic and professional communities, there appears to be some awareness of the conditions, in general, for seniors in care. But, there remains an outstanding need, as identified by the Arthritis Society, for improved awareness of the special needs of seniors in care with arthritis, especially among care-givers. 1.4 Current issues Considering the specific social-psychological needs of seniors with arthritis who are in care, a f irst issue is a question as to the proper domain of concern and action. One possibility is to teach staff about the social-psychological needs of seniors with arthritis. This approach assumes: that seniors with arthritis have special social-psychological needs that distinguish them from those who suffer other chronic diseases, and, that adequate knowledge on the part of facility staff is a critical element in the 9 providing of services to this specific population. To focus on the individual social-psychological needs of seniors, and especially those with arthritis . . . The stage of l i fe referred to as 'old age' is discussed by Blumenfield (1986), referring to Erikson (1963) especially on the developmental tasks of late l i fe . These are related to "a re-thinking of one's perception of the meaning of life and one's own ideology". Concrete primary tasks for the 'young old' group involve the need to develop a sense of integrity, sk i l l , independence, and capability, as arthritis causes disruptions in these self-perceptions. Energy that is needed for self-integration and development is devoted instead to coping with illness and the consequent need to develop new l i fe strategies. There is a decrease in abilities in many everyday activities, as pain, fatigue, stiffness, and medication all complicate the situation. The disease is a constant companion. Stressful factors include anxiety about involvement in medical treatment; 'agist' prejudices of physicians: "You're eighty years old; what do you expect?"; the medicalization of social and psychological problems, as isolated and grieving elders are referred for medical rather than social responses; isolation from accustomed support groups: family, neighbourhood, . . . ; and isolation from a useful and recognized role in society. Arthritis often amounts to a compounding of many of the common problems of the aged. A main distinguishing feature, however, is that some kinds of arthritis, unlike many other problems associated with aging, are irregular and unpredictable day-to-day, even hour-to-hour, in the resulting severity of pain and immobility. This special chronicity causes special problems for the senior, regarding self-care, social activities, and the pursuit of 10 other self-maintaining and satisfying activities. Involvement with other people, which customarily involves expectations and some planning, is often discouraged for the senior, due to the difficulties of unexpected disability, and the consequent frustration and embarrassment. It appears that the individual's sense of personal worth and supportive solidarity with others — those resources and strengths that enable us to manage through difficulties — are often weakened with arthritis and its consequences. So the vicious circle emerges, when the capacity for self-help and also for the seeking of help from others are weakened by the social effects of the disease. While addressing social-psychological needs, in addition to information on the experiences and the problems for seniors with specific diseases, it is natural to consider also the social-psychological setting of these people and their problems. Wells and Singer (1986:lf) write: "As long-term facil it ies serve an increasing older and more disabled population, an even greater effort is required to provide a normal living environment that ensures the maintenance of residents' capabilities and potentials. The traditional hospital-based model, which reinforces passivity and dependency, is inappropriate, (see Shore, 1979). "It has been clearly and consistently shown that lack of participation, inactivity, and dependence have an erosive effect on social functioning and the sense of human dignity, leading to apathy and further physical and mental deterioration, (see Mechanic, 1979) "(Wells, Singer, and Polgar) have recently completed a three-year project which demonstrated a process in which residents, staff and families participated in developing policies, programs, and services to enhance the well-being of residents and the quality of life in institutions for the elderly. "The unique features of this approach are the 11 thrusts: - to empower residents; - to develop joint staff-resident initiatives; - to engage families. "The project developed untapped potential: - the capabilities that became evident in the residents (despite physical and cognitive impairment); - the interest and dedication of families; - the responsiveness and commitment of staff." Wells' (et. al) project model uses strategies of organizational development, but "goes beyond the traditional approach by including all constituents". It is a collaborative model, a partnership of residents, staff, and families. The model used a standardized set of instruments especially developed for assessment of institutional care (The Multiphasic Environmental Assessment Procedure: MEAP; Moos and Lemke, 1979). Results of the project pre-tests confirmed that the institutions involved gave good physical and health care, but staff and residents had somewhat different perceptions of their home as it was currently, and as they would like it to be. Residents valued dimensions of personal growth and resident influence most highly. Staff, although valuing the independence component of personal development, valued dimensions of the institutional system, that is , physical comfort, and order and regularity in the organization. In assessing the outcome of the implementation of the model, by Wells and Singer, comparison of pre- and post-test assessments between demonstration and comparison homes showed statistically significant changes in certain areas including the following: 12 "- the extent to which behavioural requirements were imposed on residents decreased; "- staff attitudes about the needs of residents and how services should be provided changed: the importance of psycho-social dimensions of the residents' lives were much more highly valued; for example, staff gave more importance to the areas of residents' personal growth - residents making personal decisions, learning how to deal with problems, having challenging activities and being encouraged to discuss their feelings and concerns. "- staff expectations for the home also increased: residents should have influence on how the home functions, staff should not restrict residents unduly." (op. c i t . : 7) Considering the needs of the residents, it appears that there is need for both a micro approach, dealing with care-givers' understanding and approaches with residents, and also, a macro approach, dealing with the context or the environment that largely determines the nature of the micro, one-to-one, interaction, as it also largely affects, and possibly aggravates, the problems that the one-to-one would address. Education and development in these issues areas could raise standards of care, realizing benefits to physical and social health of residents, and to working conditions, with increased staff satisfaction and performance. This project has a specific objective related to the micro-approach, that is , regarding the Care Assistants' understanding and approaches with residents. The immediate outcome of the project is planned as an in-service training program to upgrade the skills of facility staff. Chapter Two  Interaction of Research and Practice 14 2.1 Introduction This thesis documents a student's practice research, undertaken as part of the requirements for the Masters' Degree in The School of Social Work, at The University of British Columbia. This present work was done in the year when the integrated practice research option was first introduced at the School. The option was available to MSW students specializing in community work, planning, management, or policy. It involved the following components: A/ Practice 1. In consultation with practice faculty, locate a setting for field practice in which there is an opportunity to carry out a research study in an area of interest to the student. 2. Work with an agency or community group in the setting to formulate a researchable problem of suitable scope. 3. Carry out the research in consultation with this group. 4. Help the group identify the policy and programming implications of the research, and plan for utilization of the results. 5. Help with dissemination of the results. 6. Undertake directed readings tutorials, under direction of the student's program planning committee. B/ Research: In conjunction with the field practice as above, a student in this option is required to take a specified course of studies of research methods, and to prepare a thesis, as a report of the student's field research. 2.2 The setting for the Practice-Research At the time of writing, the Education Committee of the Arthritis Society (B.C. Division) in Vancouver, was negotiating to provide in-15 service training to care facility staff. The in-service program was to be given by the Nursing, Physio-, and Occupational Therapy, and Social Work educators of the Arthritis Society and would follow the lesson plan developed at the University of Akron, and the Ohio Department of Health. This program, "A Model Teaching Plan for Nursing Assistants Caring for  Arthritis Patients in Ohio's Nursing Homes" (Halloway, 1985), was designed to f i l l the gap between the needs of patients in care facil i t ies and the skil ls of direct care-givers who provide the majority of the care. The goal of the Ohio program was stated as: "To improve the care provided to nursing home residents in Ohio who have arthritis, through the provision of an in-service arthritis education program designed to increase the level of skills of nursing assistants." The complete goals and objectives of the Ohio teaching plan are given in Appendix Two. The Ohio model has a Nursing, Physio- and Occupational Therapy orientation; since there were no Social Workers employed in Ohio faci l i t ies a Social Work orientation was not included. In B.C. faci l i t ies, care staff does not include Physio- or Occupational Therapists, however, all facil it ies have Nurses, and many of the larger faci l i t ies do have Social Workers. As part of its outreach program, providing services to the community, the Education Committee, with the Department of Social Work, at the Arthritis Society defined a project to develop a Social Work component and append it to the existing training program. The objectives of the project were: 1) To determine the psychological, social and/or emotional needs of seniors with arthritis living in long-term faci l i t ies; 16 2) To develop objectives and lesson plan to address the identified needs; 3) To implement the Social Work part of the program to facil ity care staff; and, 4) To obtain care staff input with respect to the receptiveness of the information and the present methods used. The student's practice research activities were related to Objective 1, determining the psycho-social needs of seniors with arthritis living in care faci l i t ies. A staff member of the Department of Social Work Services at the Arthritis Society in Vancouver, who is also a member of the Education Committee, acted as Field Instructor in the practice-research. The Field Instructor developed a proposal for the research design, defined as a 'problems/needs inventory', regarding the special social-psychological-emotional problems and needs of seniors with arthritis in care faci l i t ies. The role of the student was to assist with implementing the research, for the purpose of gathering information content for the in-service training program for Care Assistants. Such information will be added to the existing Ohio program, to constitute a program package, with a Social Work component. 2.3 Research procedures at the Arthritis Society An early step in the project was to present the research proposal to the Research Committee of the Arthritis Society. The Research Committee was established to promote research and to ensure quality of research at the Arthritis Society. Members of the Committee are the Medical Director, the Head of the Division of Rheumatology, Faculty of Medicine, UBC, the Directors of Nursing, Physio-, Occupational Therapy, and Social 17 Work, the research secretary, and members-at-large include a nurse and a physiotherapist, all of the Arthritis Society. The Committee meets to review research proposals and to assist researchers associated with the Society in maintaining a high quality of research related to arthritis. The review procedure includes the researcher completing a form, providing information about the proposed project: purpose, method, population, ethical considerations, budget, and personnel requirements. At the f irst presentation of the research proposal to the Research Committee, the proposal was not accepted since the committee required more information than had been provided on the methodology of the research. The Committee made recommendations for the strengthening of the research proposal and design. These recommendations were incorporated; the revised proposal was submitted to the Committee Chairman/Director of Research and to one Departmental Director, and was approved. (The letter of approval is included here, in Appendix Three.) It is customary, when research is completed, for the researcher to return to the Committee to present the research findings. Also, an annual research day is held at the Arthritis Society, when recent work is presented and discussed. This was an opportunity for the student and the Field Instructor to present this research project to the professional community, and thus to highlight the contribution of Social Work in the care and treatment of arthritis. 2.4 Student-Field Instructor collaboration in the project The Field Instructor and the student worked closely together during the course of the student's involvement, in both planning and implementing the research design and methods. The student brought a 18 'citizen-participation' approach to the work, applied here in the form of initiatives to enhance seniors' and staff participation in the development of the training program. As discussed below, in Chapter Four, on the Research Design, there were administrative and situational constraints on the manner and extent to which such participation could be realized. However, there were several areas in which the student was able to contribute significantly to the existing project design, specifically, promoting an enhanced recognition of the problems and needs of the care-givers in the situation. The student was thus able to contribute a somewhat expanded scope to the project, according to a 'systems' perspecti ve. To keep the field-placement project to a scope that was feasible within the time constraints of the school year, and to maintain a clear definition of the project, it was necessary to focus on problems and conditions directly related to the arthritis of seniors in care, such that could be dealt with by care-givers in their daily work. The student's systems perspective, which was supported by sources in the literature and by many respondents, urged recognition of conditions in the seniors' and care-givers' environment, such as heavy work loads, and the pressures of routine and schedule, that were important factors affecting the care-givers and the social-psychological-emotional well-being of seniors. However, much of that area of concern is beyond the role of care-givers to change, and so is beyond the scope of the in-service training program. Hence, this project was unable to act on such concerns in its immediate outcomes, but the student's interest in that area brought some important information to light. This information is applied to recommendations for the format of the in-service program, 19 emphasizing the care-givers' active, contributing participation in the program, and thus modelling a participatory, decision-making style of work that could be carried back into the care-givers' daily work in the faci l i t ies. And, further recommendations bear on the nature and the effects of institutional systems and their effects on the well-being of residents and staff; these might be of interest to facil ity administrators and service planners (see Section 5.4, below). Overall, the student's involvement in this project with the Arthritis Society, and with the support of his Thesis Committee, through the field practice-research program at the School of Social Work, was a productive three-way cooperation. The resources and perspectives of the three parties were combined to focus on a specific area of concern while maintaining a contextual perspective that revealed possibilities for future research and program work. As the student considered and negotiated on several aspects of the project and the nature of his involvement in i t , he gave some thought to a model of analysis of a field-practice, a model that might be useful to a student in assessing a proposed field-placement. The reader is referred to Appendix One, for a discussion of general issues and some pertinent questions that could be asked. Chapter Three The Research Problem 21 3.1 Issues selected for research: Rationale The research enquired whether seniors in care facil it ies had any special social-psychological-emotional problems related to their having arthritis; it was especially concerned with any such problems that could be dealt with by facility Care Assistants. The study enquired also into ways that the Care Assistants could respond to such problems, for 'the greater comfort, capability, and satisfaction of residents of care faci l i t ies who are suffering arthrit is' . This issue was selected by the Education Committee of the Arthritis Society, to focus the development of an in-service training program as part of its outreach into the professional and lay communities. The objectives of the Education Committee of the Society include the delivery of Education programs dealing with arthritis to medical and allied health care professionals, and to other personnel, including Long-Term Care Homemakers, and drivers of transportation for the handicapped. The educational programs of the Arthritis Society have customarily been organized according to the Society's Treatment Areas: Nursing, Physiotherapy, Occupational Therapy, and Social Work. It came to the attention of the Education Committee, that a "Model  Teaching Plan for Nursing Assistants Caring for Arthritis Patients in  Ohio's Nursing Homes", had been developed at the University of Akron and the Ohio Department of Health. The Ohio model included Nursing, Physiotherapy, and Occupational Therapy components (Halloway, 1985). The objectives of the Ohio Teaching Plan (see Appendix Two) are to "provide general information [to], . . . to train and to instruct Nursing Assistants" in aspects of care that are concerned predominantly with physiological aspects of the disease, regarding symptoms and 22 effects, medications, and such features of nursing care as the principles and practice of transferring patients, relaxation techniques, exercise, and diet. Background information, examples of the content and method employed, and the complete objectives of the Ohio Teaching Plan are included in Appendix Two. The Department of Social Work Services, Arthritis Society, proposed to develop a similar, Social Work, component to augment the existing program. This expanded Teaching Plan was, at the time of writing, under negotiation for delivery to care facility staff by Arthritis Society personnel, in various locations, in a one-day in-service teaching program. This was seen as an opportunity to use a field-tested teaching plan, requiring only the addition of a Social Work component, to expand the outreach of the Education Committee to a yet unserved target group, the facil ity Care Assistants. To complement the Nursing, Physio- and Occupational Therapy components of the Ohio Teaching Plan, information from this present research was to be applied: 1) to develop educational objectives of the Social Work component of the Teaching Plan; and, 2) to develop the Social Work part of the in-service program, to be consistent with, and to augment, the existing program. 3.2 Knowledge-building functions and conceptual models of the research The research was conducted as a survey of respondents involved in various ways with seniors with arthritis. Its function was to explore and map their opinions, observations, and recommendations on relevant 23 issues. Also, demographic and statistical information was gathered on the population and on the disease. Except for this latter, the data collected was entirely qualitative. As was expected, the information thus gathered was readily organized into a set of areas of concern; these were to be adapted to the Teaching Plan. This is consistent with a 'dimensional model' of research, that is , one revealing prominent features in a broad subject area. As an exploratory type of research, the work was not based in any theoretical orientation as to its subject matter, except where, in the intended application of the findings in the teaching program, it was assumed that providing the expected kind of information to facil ity care-givers would have the ultimate effect of improving the quality of l i fe of residents. The objectives were defined as: 1) gather information on any special social, psychological or emotional problems specific to seniors in care with arthritis, and, also, on what could be done by Care Assistants to help relieve these problems; 2) use this information to develop a Social Work component for the teaching plan/in-service program; 3) deliver the in-service, to increase awareness on the subject, among care-facility staff; and, the long-term objective, 4) improve quality of life for seniors in care with arthritis. The field practice dealt with in this paper was focused on Objective One; and it produced recommendations towards Objective Two. 3.3 Other relevant research Wells', Singer's, and Polgar's findings (1986) indicate capability 24 and interest among seniors for taking responsibility in their affairs. Further, Midlarsky and Kahana discuss "helping by_ the elderly, in place of the almost exclusive emphasis on service provision to the elderly" (1983:10). The authors refer to 'learned helplessness', as the seniors develop negative self-conceptions through interaction with an environment that labels them incompetent and dependent. This labelling is reinforced as the senior tends to act according to peoples' expectations, and to these negative self-perceptions. "Both limited opportunities and biological decline have contributed to a view of older people as dependent, helpless, and even hopeless. Negative societal attitudes . . . have been repeatedly demonstrated. As others view them in negative terms, and opportunities for active participation diminish, the elderly experience a growing l ist of worries regarding financial problems, loneliness, and boredom, lack of independence and a sense of being rejected, not wanted, not needed . . . . "On the other hand, it is clear that while there may be an increase of the need for help, concomitant with aging, elderly individuals are often very competent people, with the ability and the time to be of help to others, and to themselves." (loc. cit.) Cross-cultural studies in health, illness and healing have emphasized the importance of self-opinion and of social relationships in the onset and remission of certain physiological conditions. As it has been observed on many occasions, physiological/psychological depression associated with rejection and low self-esteem have an inhibitory effect on immunological responses to certain pathological conditions; whereas, a sense of well-being associated with social integration often has the reverse effect, de-inhibiting the immune systems and leading to remission in cases of such diseases as cancer and arthritis. (See especially: Amkraut, and Solomon - various references; Simonton, Southam, Weinstock, 25 and Stein; see also: Moore, et a l . ; Morely; Watkins; Doloman; Freidman; Glasgow and Adar; Goodman; and Aldine.) To break the pattern of learned helplessness, Peck (1968) developed a model based on Erikson's later stages of life development (1963). Quoting from Midlarsky and Kahana (op. c i t . : 12): "In Peck's view, the aged achieve healthy functioning by resolving three major crises: . . . the need for the older person to define himself as worthwhile, not only insofar as he can do a full-time job, but, also, perform other roles, and based on his own self-worth, . . . (And the second cr isis) , the elderly need to shift their focus from bodily strength, beauty, and well-being, to societal and mental faculties, . . . (The third crisis) . . . refers to the need by the elderly to deal with impending death through a shift in emphasis from the continuation of the self, to the question of the enduring impact of one's contribution to others. "(The emphasis) . . . is the need for elderly persons to retain their sense of self-worth and dignity through concentration on their contribution to society in a broad sense " 3.4 T h e contribution of Social Work As suggested by other research, as above, social roles are major concerns for seniors. However, negative societal attitudes towards the elderly often lead to a negative self-image, which has been identified as a factor in declining physical health. As found by Blumenfield (op. c i t . ) , and by Cohen (op. c i t . ) , the special physical problems associated with arthritis constitute threats to self-esteem, to social relations, and to fulfillment of social roles, with common results in withdrawal and depression. It is clear that Care Assistants working closely with seniors day to day could have important effects on such factors. 26 This project was planned to bring the special skills and knowledge of Social Work in counselling and group work, and in inter-personal relations, to complement the predominantly physiological approach of the Ohio Teaching Plan, with a Social Work perspective on what is also an essential aspect of human nature - the social, psychological, and emotional. With this addition, the augmented teaching plan would contribute more completely to the Care Assistants' abilities in caring for the whole person. 3.5 Limitations of the research The present research gathered information from informed respondents regarding specific psychological and social problems of the subject population. This information was to be made available to care facil i ty staff, through the in-service program with recommendations how they might approach their work with the residents, to contribute to their increased comfort and well-being. As the literature suggests, the denial or provision of opportunities for seniors' involvement in making arrangements for their own basic affairs of living may be a critical factor in their sense of well-being, and in the severity of their physiological condition. Some important factors and conditions in institutional care that may limit the possibilities for such involvement of seniors are beyond the control of Care Assistants, and so then, are beyond the immediate scope of this project. Since the in-service was planned to be delivered specifically to the hands-on care-givers (Care Assistants, Aides, and persons with similar 27 responsibilities), it was intentionally limited in scope to the problems that could be dealt with by those people in their daily work as it is now defined. So too then, the gathering of information for the in-service was guided with that objective in mind. For example, the difficulties experienced by a resident might be due in part to deficient transportation services. The Care Assistants would not, in their present usual role, be involved in improvement of that service. But, through the in-service, they might be given an understanding of the frustration and loneliness often felt by seniors with arthritis because of a lack of mobility. They might, then, better understand the senior's behaviour, and be better able to have an understanding and supporting relationship with a person suffering the loss of that personal freedom. While the primary outcome of this research was to be the in-service training program, with its certain focus, also there is the initiative within the Arthritis Society, to act on any findings, with the possibility of making recommendations to other sectors of the care community, so as to improve the quality of care, and consequently the quality of life of those whose comfort and capability are reduced by the effects of arthritis. Chapter Four  Research Design 29 4.1 Research design An objective of the research process was to generate statements on seniors' problems and on possible interventions, in response to the two research questions: 1) Concerning seniors with arthritis in care faci l i t ies, what, if any, are the special social, psychological, and emotional problems of these people, that are related specifically to their arthritis? And, 2) What can the hands-on care-givers do, to help relieve these problems? The research process was based on the Community-Oriented Needs Assessment model (CONA), developed by Neuber & Associates (1980). A basic goal of CONA is to adapt services to a specific community. The purposes and goals of human services are more likely to be achieved if the agency develops a "conceptual and operational framework for providing services based on the perceived goals, needs and characteristics of the community which the agency serves" (op. c i t . : 15). The CONA model was devised to enhance two-way communication between the community and the service-providers. It uses data collected from three sources: demographic, statistical profiles; designated key informants (professionals); and individual interviews with randomly-selected consumers, potential consumers, and the general public, on personal and community problems and needs, awareness of services, and attitudes towards problems and relevant services. The advantages of the model include: 1) the involvement of the public and consumers in the needs assessment process, enhancing public knowledge of and involvement in services; and, 30 2) Community education, with the public, about the operations of the services, and, with the key informants, improving professional rapport. The research process was implemented as shown in the following table: Table II: Literature review; Demographic/Stat. Info, gathered Social Wk. Dept. Brainstormi ng Advisory C'ee First Meeting Never Surrender Nominal Group Key Informant Interviews Delphi Techn.: letter distrib'd responses rec'd Advisory C'ee Mtg. second distrib'n responses rec'd Facility Staff Mtgs. Discussions Convergent Analysis Problems/Needs Inventory: Procedure December January February March April May I 1 31 Referring to Reid and Smith's 'dimensions of research design' (1981: 64ff), this was a non-experimental, or naturalistic study of phenomena "as they l ie", with no attempt to alter conditions or generate events for study. It was designed as a non-intervening gathering of reports of experience and opinions of health care professionals, health workers, and of seniors. This was primarily a descriptive study, in Reid and Smith's words: "delineating characteristics of social systems and target problems". It was a mapping of the main features of an area of concern, with no attempt at hypothesis-testing or theory-building. Its basic function was to gather information to be used in developing the educational objectives and the content of the Social Work component of the augmented Teaching Plan. Sampling for all but one grouping of participants and contributors according to Patton's (1978) classification was 'purposeful', that is , non-random. Participants were primarily people known to the researchers as having extensive first-hand experience with the issues of concern. According to Patton, this can be called 'typical-case sampling', avoiding the special, deviant, unusual, extreme, etc., or, 'critical-case sampling', permitting logical generalization and a maximum application of information to other cases. Facility care-givers were included as five facil it ies were randomly selected and arrangements were made for the researchers to hold an in-service and discussion in three of those faci l i t ies, where it was administratively feasible to do so. Each method, with its corresponding participants, has the potential to yield information from a different point of view, and on a different 32 aspect of the problem. Having this variety of people and perspectives in the sample, this design has a good chance of yielding a fair representation of the current spectrum of thought and experience on the matter of concern, among associated personnel. Thirty-seven health care and social services professionals, and seniors, and seniors' group organizers, participated; and also, a seniors group meeting of about 25 people participated in a group discussion of the issue. About 30 facility personnel including care-givers contributed their views in unstructured discussions on the research questions. A notable gap among the respondents is in the absence of any senior residents in care faci l i t ies, with arthritis. Consideration was given to the question how residents could be included among the respondents, but, given the limits of the time available for the project, it was found to be unfeasible to do so. The administrative complexity of obtaining access to an adequate random sample of residents with arthritis, and that of developing an interview technique and schedule suitable for implementation with seniors in the care faci l i t ies, were prominent factors in this decision. By comparison, the relatively straightforward methods involving a variety of readily accessible community professionals and lay people closely involved with seniors in care, suggested the likelihood of time-efficient access to information directly pertinent to the proposed training program for care-givers. 4.2 Methods of Data Collection The decision to use the several selected informant groups in the research was based on the anticipated advantages of the participation of 33 a number and a variety of personnel in the network of services for seniors with arthritis. Accordingly, one's work might be known to, and supported by, a 'public' that was, in effect, created by the research itself . This is in keeping with Patton's 'utilization-focused research' (1978), and is also good program (and agency) marketing technique, with the project development process including user-community input, and, so, generating support for, and acceptance of, the product. The following paragraphs briefly discuss the methods employed, and their respective strengths and limitations. Delphi Technique To a purposive sample of 25 respondents including Long-term Care Case Managers and Social Workers, Physiotherapists, Occupational Therapists, Nurses, Rheumatologists, and General Practitioners, a letter and questionnaire were distributed. The questions were: 1) Are you aware of any psychological-social needs experienced by seniors living in long-term care faci l i t ies, related to their arthritis? Describe briefly. 2) Can you suggest ways that these unmet needs could be addressed? Responses from the returned questionnaires were transcribed verbatim into a single l is t , answer by answer, in no specific order. An Advisory Committee, including health care professionals, seniors' group administrators, and seniors with arthritis, was formed, to assist with the analysis of the responses to the first mailing, to produce a l ist of representative key points. This short, comprehensive l ist was then to be distributed to the same 25 respondents, for them to rank the items in order of observed frequency of occurrence. The overall outcome of this 34 method was expected to be a ranked listing of special social-psychological needs of seniors with arthritis in care, and of ways that these needs could be addressed. Some advantages of the Delphi Technique as listed by Seigel, Attkisson, and Carson (1978), are: the anonymity of respondents reduces pressure to conform to a group, or to dominant individuals; and, it is an efficient use of the respondents' time. The slow response time of some respondents was a disadvantage in this method, and some responses tended to be inappropriate, in that some of the problems identified and actions recommended were outside the range of possibilities for Care Assistants to deal with on the job. An in-house trial did not reveal this tendency; a wider trial might have done so. The analysis of the first round of responses by the Advisory Committee was a challenge for everyone present. Two of the professional members of the group did not attend, and those present found the process unfamiliar and diff icult. The group leader found it necessary to take a directive role, to achieve results in keeping with the overall research plan. Consequently the task group was not reconvened. Two of the professional members had become unavailable for non-related reasons, and the researchers considered that the analysis might best be undertaken by members of the Department of Social Work at the Arthritis Society, as personnel more familiar with an abstract, analytic treatment of information. Key Informant Interviews Nine professionals with extensive first-hand knowledge of the 35 situation were interviewed. The interviews were based on two questions, that were revisions of those given in the Delphi Technique: given the tendency towards inappropriate information in some of the Delphi responses, more specifically-focused questions were developed for the interviews. 1) Please think of seniors whom you know, who are residents in care faci l i t ies, and who have arthritis. Focusing now, on the effects of the arthritis on these people, think of any social, psychological, or emotional problems that you are aware of . . . We are seeking your thoughts on social, psychological, or  emotional problems that are related specifically to the seniors' arthritis. Please discuss such problems. 2) Considering the problems that you have just listed, please consider the following question for each problem . . . "What could the hands-on care-givers in the faci l i t ies do to help with this problem?" The interviewer explained briefly that the responses were to be used with information from several other sources and procedures, to provide the content of an in-service training program for facility care-givers. The advantages of the Key Informant interviews were in the opportunities for face-to-face conversation with informed, interested personnel, that elicited their concerns, using their terminology. Given a non-directive approach by the interviewer, this method yielded results with minimal researcher influence on data; there was a good response rate. The limitations of this method in this instance were minimal; the respondents recognized the value of the enquiry and were pleased to speak on the subject. 36 Group Approaches Nominal Group Technique was undertaken with the senior women's support group of the Arthritis Society. All participants themselves had arthritis. The large group of about 25 was given a brief verbal presentation on the subject area. The presentation included a hypothetical description of the physical problems of pain and disability familiar to the participants, as arthritis sufferers themselves. Common psycho-social problems were referred to (such as frustration and anger) as illustration. And, some commonly-used coping methods were mentioned (medication, relaxation with music, exercise, etc.). This discussion served to introduce the concept of 'psycho-social-emotional needs' of seniors with arthritis. The large groups then divided into three small groups to brainstorm on the social-psychological-emotional needs of seniors in care with arthritis, for about 20 minutes. Responses were listed on large sheets of paper in each group. The large group reconvened to consider these l ists, and to gather similar items from the several sheets, into a single, representative l ist of items. Participants were then asked to rank individually these items in order of importance; individuals' ratings were collated to form a single priorized l is t . This technique had the advantage of stimulating discussion within the group, in the participants' own words. Disadvantages included the need sometimes for the group facilitator to intervene when the participants' responses did not conform to the rather precise requirements of the research design. There was some occurrence of 'group think', as participants 37 sometimes would 'add on' to what others had said, but often there would be a pause and them someone else would give an idea in a fresh area of concern. Also, Siegel, et a l . , point out a disadvantage in the method's lack of precision; "Votings or rankings are made without thorough or careful sorting out of the ideas into appropriate categories". (1978) A recommendation for this method, arising from this experience, is to include the questions addressed to the group written in a large, clear script and posted so that participants could refer to it during the session. As the Key Informant interview questions were made more specific after the experience of the Delphi Technique, similarly, more specific questions could be addressed to a Nominal Group meeting, with the intent of reducing the need for influence of the facilitator during the course of the response part of the session. A brainstorming session among members of the Department of Social Work at the Arthritis Society produced a listing of issue areas related to the research questions. This input has advantage in the familiarity of the respondents with the conceptual system implicit in the research project, and with the sets of experiences under study. The objective of this session was to suggest broad subject areas that could be dealt with in the in-service program. An arrangement was negotiated with the administrators at each of the three selected faci l i t ies, for the researchers to have access to the care-giving staff through a mini-in-service on arthritis, primarily regarding physiology. As an adjunct to each of these presentations, a brief discussion was opened on the psychological and social effects of 38 arthritis, and participants were asked to give their impressions in an unstructured group discussion, as to what, if any, such effects might be. Finally, they were asked what could be done in their work to help relieve these problems. The session was presented, and the discussion led, by a Social Work educator with the Arthritis Society. The researcher made notes of the participants' remarks, and of his observations during these sessions. Considering possible disadvantages of this method: the introduction to the psychological-social needs and common coping strategies that was included with the presentation might have influenced participants' responses. Also, there was l i t t le control or standardization in this method; it was a matter of brief group talks on the subject area, with the discussions led and prompted by the presenter. The manner of presentation actually developed from one session to the next, as approaches were tried, evaluated (informally), and improved. The meetings were attended also by nursing and administrative staff; a discussion among Care Assistants alone might have provided different responses. Among the strengths of these sessions were the contributions of some perceptive and out-spoken individuals who provided to the discussion some relevant on-the-job realities. A side effect that appeared beneficial was that the discussion for many participants seemed to be on a topic that was new to them. The researcher had the impression that the session provided some insights to some of those present, and had opened the possibility of on-going discussion among staff members on their own. 39 Literature review: Numerous publications were found, on psycho-social factors in chronic illness and in arthritis, through a search of the library and the fi les of the Department of Social Work Services at the Arthritis Society, through an on-line search through the library at the School of Social Work, and through referrals by various respondents. The publications presented information and recommendations from a wide variety of perspectives and experience, and they supported and complemented data gathered through the other methods of the study. The use of the literature as a source of data was carried out as a 'content analysis', an extraction of ideas from relevant literature, to be incorporated with that from other sources, in the convergent analysis. The literature included few sources that dealt directly with the question of psycho-social-emotional problems of seniors in care, with arthritis, that could be dealt with by the Care Assistants and Aides. Most that was found to be of value bore on the research question by implication or association. So, with regard to the research question itself , this might be considered a disadvantage. However, the literature did provide a perspective broader than the closely-defined concerns of the in-service program, and, it provided information about the situational context of that program. Some of this was useful in suggesting ways that the care-givers could improve, and also be supported in, their work. The literature also provided theoretical background for both micro and macro approaches to improvements of conditions for seniors - regarding the care-givers in their work and their relations with the residents, and regarding the structure and function of the care 40 faci l i t ies themselves. 4.3 Limitations of this overall method This project, in producing an in-service, provides for just some of the factors needed in the progression from an in-service program through increased awareness, to increased quality of l i fe . Adapting Bartlett's model of patient education (1985) to the present application, one of his principles is that: "Knowledge is necessary, but generally not sufficient, for behaviour change." Bartlett emphasizes also, the need for enhanced social support as a principle of education for behaviour change. These principles were considered in the development of the objectives and content of the in-service itself. Also, on the basis of its findings, the outcomes of this project include recommendations bearing on situational factors that are outside the scope of influence of this project, per se, but that are seen as important to the improvement of conditions for seniors in care with arthritis, and for the care-giving staff. One (professional) participant in the Delphi Technique declined to respond to the second round of that method, for the reason that, the researchers "made assumptions about seniors in care with arthritis, that their problems were discernable from those of seniors in care, in general". This respondent said that regarding loneliness, anger, isolation, etc., there is no difference; the distinction does not hold. There has been no rigorous clarification of such a distinction for the purpose of this project. However, the clinical manifestations of arthritis are known; there are many conditions that could contribute to 41 these manifestations, but it is known that arthritis is one of them. Some important psycho-social-emotional problems experienced by seniors in care because of these manifestations are similar regardless of which of the contributing conditions (arthritis, or some other) is present. In dealing with the clinical manifestations and any psycho-social-emotional concomitants, this project and the in-service are dealing with conditions common among seniors in care. It could be seen as an advantage, in educating for improved quality of care, that the effects of other common conditions could be dealt with, as well as those associated with arthritis. But also, it must be said, if an objective is to be the development of a clear distinction between the effects of arthritis and those of other disorders, then certainly a more precise research method is required. Limitations on the selection of, and approaches to respondents is also a matter of interest. In many ways it would have been advantageous to have included seniors in care with arthritis among the respondents. The seniors' personal experience and understanding of themselves and their environment are at the centre of the present research question. Through the present research design, this project can only estimate the nature of that experience, as it is informed by responses of people around the seniors themselves. And, it is possible that information gathered directly from seniors could be quite different from that from the other sources. But, as mentioned above, the limits of time, and administrative and technical considerations made it unfeasible to include what might have been considered an ideal, comprehensive sample. Also, again, it might have been advantageous if the facil ity care-42 givers had had an opportunity to express their concerns, and priorities, by a method that ensured the confidentiality of their responses. The method that was employed has the advantage of being a relatively quick survey technique. As illustration: one could reasonably expect to enter the office of a medical or social work professional, mention that the issue was the psycho-social needs of seniors in care with arthritis, and within a few minutes of f irst meeting that person, have information that was very much to the point. By contrast, the sampling and interviewing of seniors could be a lengthier process. Ideally, a random sample would have been drawn from a population of seniors who had been diagnosed as having arthritis and who exhibited the clinical manifestations of the disease. These subjects could have been tested, using, for example, the Minnesota Multi-phasic Personality Inventory (MMPI) and the Arthritis Impact Measurement Scale (AIMS), for correlations between arthritic conditions and social-psychological and emotional problems. But, with such a research design, there are problems with feasibility: to develop a correct random sample of seniors in care with arthritis from a population based on medical diagnoses, on clinical manifestations, and on the agreement of facility management to interviews, already presents challenges enough. But also, there is the matter of gaining the trust and cooperation of senior residents. Given that some seniors in care are fearful of complaining, it could take time to develop trusting relationships to bring out candid accounts of respondents' experiences. Similarly, one could anticipate that care-givers, with their job-security and work-place relationships in mind, would be unlikely to be 43 entirely trusting of a stranger asking questions and taking notes. The marketing of services is a vital function of a service agency. Unless a program has the participating support of certain publics and colleagues, it might not be a program in fact, but only a document on the shelf. An effect of the chosen research design involving a variety of professionals and agencies was to inform and to stimulate interest in the project in the care-giving community. Two anticipated benefits of seniors' involvement remain unrealized. The first was in the comparison of data gathered from professionals and others with responses of the seniors themselves. The second, was related to support-group effects in the nature of peer-counselling and consciousness-raising that had been anticipated by the involvement of seniors as respondents. It had been hoped that the research process itself would have direct and immediate benefits to the seniors with arthritis in care. 4.4 Data analysis plan The raw material gathered from the several research methods is as follows: The Never Surrender Nominal Group Technique produced a priorized l ist of specific problems faced by seniors in care with arthritis, according to the opinion and experience of a group of seniors themselves suffering arthritis. The Delphi Technique produced a l ist of problems ranked in order of reported frequency of occurrence, and also an unstructured l ist of recommendations as to what could be done to relieve these problems. From the informal discussions with the facility care-givers, notes 44 were taken of their responses to the group leader's questions. The literature review produced a set of notes as excerpts on subjects related to the research questions. The Key Informant interviews yielded tape recordings, and subsequently, transcripts, on the research questions. The Nominal Group and Delphi Techniques produced data in the form of l ists ready for collation into the problems/needs profile. With the other discussions, the literature review, and the interviews, similar l ists of main points were developed simply by scanning the notes or transcripts and listing all the points of information that were made at each source, and then organizing these points into clusters of related items. So, for each method, a l ist of main points or areas of concern was developed, to fairly represent the range of problems and recommendations gathered by that method. The items in each l ist were ranked according to the frequency with which the individual points were made, and according to the emphasis that was given them by the respondents or at the source. This set of l ists is a distillation of the raw data that was generated by the research, selected for suitability (as information pertinent to conditions that can be addressed, by Care Assistants in their work) for use in the in-service program. These lists are applied in Chapter Six to develop, f i rs t , general recommendations regarding the approaches and methods for the in-service program, and, second, a set of propositions on the social-psychological-emotional problems associated with the clinical manifestations of arthritis among seniors in care. Other data gathered in the research, and dealing with a scope of 45 issues pertinent to quality of care, but broader than that addressed in the in-service, are given, from a systems perspective, in Section 5.4. The following diagram illustrates the process of gathering information from the various sources and through convergent analysis, collating that information and organizing the whole into recommendations and propositions for the in-service program and related issues. Figure I: Problems/Needs Inventory Process: Delphi Technique Nominal Group Technique Liter Demographi CONVERGENT ANALYSIS (Ranked lists of social-psychological-emotional problems/ needs of seniors in care with arthritis) I RECOMMENDATIONS AND PROPOSITIONS The plan also called for the recommendations and propositions to be submitted to the Director of the Department of Social Work Services at the Arthritis Society, for approval for use in the in-service training program. This procedure is in accordance with the administrative requirements of the Arthritis Society. 4.5 Ethical Issues All respondents were protected by anonymity, and participation or 46 non-participation in no way affected or will affect any person's access to or treatment in any service, other programs, or employment. All participants were capable of giving consent on their own behalf, and there were no conceivable risks to any participant in the research. 47 Chapter Five  Data Summary 48 This chapter is a presentation of the data gathered by the various methods used in the research. The data from each method are presented in sections under the headings: • Brainstorming Session - Department of Social Work Services • Nominal Group Technique • Discussions with Facility Care-givers • Delphi Technique • Literature Review • Key Informant Interviews These sections are arranged in ascending order of the completeness of the information provided in each one. Data directly relevant to the Care Assistants' work with residents, and therefore suitable as teaching material for the in-service, were selected and summarized in a set of lists of main points, one l is t for each research method. Data not suitable for inclusion in the in-service, but pertinent to i t , by bearing on the teaching method, or on other pertinent factors in the Care Assistants' and residents' situation, are presented and discussed at the end of the chapter, in Sections 5.3 and 5.4. To clarify the nature of these data and of their convergence and application, the reader is referred back to section 4.4 "Data analysis plan", especially the diagram on page 45. And, as further explanation, a selective adaptation of a model: "Need Identification and Assessment Methods" (Siege!, Attkisson, and Carson; 1978) is offered here: 49 Table III: Problems/Needs Inventory: Data Sources Methods and Method Families Indicator Approaches Social and health indi-Perspective Being Data Source Name  Represented Used In This Study Government and private cator analysis agencies Demographic information Community Group Approaches Literature Review Nominal Group techniques Delphi technique Community impressions citizens Nominal Group Technique planners, Delphi service providers Technique key informants, providers health care professionals, academics Key Informants; Direct care-givers; Arthritis Society: Dept. of Social Work Literature review 5.1 Presentation of the data The Brainstorming session undertaken by members of the Department of Social Work Services at the Arthritis Society, early in the development of this project, suggested broad subject areas that could be dealt with in an in-service, regarding problems of seniors in care with arthritis, and regarding what the care-givers could do to help. The following points were suggested, as areas of information that the Care Assistants should learn about in the in-service: • arthritis is not necessarily due to aging; information on prevalence should be given • constraints to functioning • the pain is real • common medical problems of seniors with arthritis • problems with compliance 50 • psycho-social problems with elders • how frustrations are manifest • Are seniors with arthritis different from other seniors? • How does arthritis affect seniors? • How do seniors cope? • the importance of functional independence • consider a 'systems' view And, regarding what can be done by Care Assistants in the faci l i t ies, it was suggested that consideration be given in the in-service as to how: • to facilitate coping • to communicate with seniors • to use non-medical modalities • to maintain independence The Nominal Group Technique as implemented with the Never Surrender Seniors' group gave the following l ist in response to a request for information as to special psycho-social problems of seniors with arthritis in care faci l i t ies: (in order of ranking by the group) • Frustration, lack of mobility; angry at self, impatient • fear, helpless, anxiety • lack of independence • loneliness/isolated/lack of friends • pain/stress • lack of understanding • boredom - lack of social life • lack of confidence/self-esteem; feeling useless • depression 51 • peoples' indifference (put down) • no motivation/interest The Nominal Group Technique as implemented here did not produce a l ist of recommendations as to what could be done in the faci l i t ies to help relieve these problems. The discussions with facility care-givers yielded lists of points made by participating individuals. These lists were collated, then the comprehensive l ist was arranged in clusters of related points. These clusters were then ranked according to the frequency with which their constituent points had been mentioned in the discussions. The following listing gives the clusters in order of that ranking. • depression: (sadness, not worthwhile, disappointed, do not make an effort, it does not get better, hopeless, loss, want to stay in bed/in room, not want to talk to people, suicidal, stuck in one of these places, a burden, putting people out, withdrawal from society, dependent, guilty) • anger: (disgusted, resentful, enraged) • afraid: (fearful, helpless) • frustrated • isolation: (You're on your own, after a while people do not respond, people do not understand the extent of the pain, people think you're lazy) • "People should be allowed to die with dignity." "It's better to die than suffer the pain." • You wake up feeling like you've been beaten • You feel old • You suffer loss of control In response to the question what can be done on the job to help relieve some of these problems, the care-givers' most frequent responses were related to conversation: 52 • conversation: (listen to them, sit and talk with them, acknowledge their pain; value what they are saying distract them, don't lecture at them, give, allow them to speak, give them a chance to express their discomfort) • encourage exercise and activities, keep them active • understand their resistance, don't take their abuse personally, keep a sense of humour • give them time • (one suggested) the value of support groups The Delphi Technique produced the following l ist of problem areas. Respondents were asked to score each problem for frequency of occurrence. This l ist is in descending order of frequency according to the total scores for each problem area. (Distinct areas that shared the same score are separated by double lines '||'.) • frustrated • lonely • dependence • depression • feeling a burden on others || anxious • loss of self-determination || discouragement • isolated • helpless || lack of self-confidence • low self-worth || loss of dignity • loss of individuality • feeling un-cared for • afraid of being ignored • fear || angry • feeling unbelieved || emotionally stressed || worthlessness 53 • embarrassed • avoidance of being hugged/physical contact • hostile • bitter || denial • feeling desperate Ten of the twenty-five Delphi respondents recommended ways that these problems could be dealt with. Those recommendations that were appropriate as information for Care Assistants through the in-service emphasized the need for personal attention and support. Regarding communications, it was suggested that self-expression be encouraged, in terms of giving and receiving love; that a caring approach be used - a friendly word and a smile. Staff should believe what residents report about their immediate discomfort and disabilities (unless proven unreliable). It was recommended that mentally alert seniors could be seated together, and also those of similar capabilities and interests, even as informal support groups. Also, staff could encourage the support and involvement of family and other visitors, by making them feel welcome. Discretion was urged regarding toilet arrangements. Most of the Delphi respondents' recommendations were more appropriate for implementation by nursing staff or administration - such as: adjusting care programs according to individual needs, increased budgeting for staff and for services, increased availability of equipment to increase independence and self-care, the allowing of residents to make decisions related to their needs and to take responsibility for their own lives in practical ways, and the formation of support groups, to give people opportunities to vent their feelings and improve communications 54 ski l ls . There is an extensive 1iterature on subjects related to seniors in care with arthritis. The literature reviewed for inclusion as data in the problems/needs inventory was organized here under the headings: Arthritis and the elderly; Psychological aspects of arthritis; Psychology and chronic illness; and Psycho-social problems associated with arthritis, and with aging. It is mostly by implication, rather than by direct treatment of the subject, that information pertinent to seniors in care with arthritis is to be found in the literature. In the literature that deals most closely with arthritis and seniors in care, prominent areas of concern include self-image or self-esteem, and withdrawal or isolation from important social roles. The notion of 'capability' runs throughout. Concerning Arthritis and the elderly, Blumenfield (1986) discusses psycho-social-emotional development in the later developmental stages of l i fe as being inhibited by: pain, stiffness, immobility, and the effects of medication, with the effects of: • deteriorating self-image, withdrawal, loss, depression, self-blame. And, Cohen, Reese, Kaplan, and Riggio (1986) discuss pain, the discomforts of treatment, mobility problems, and difficulties in self-care, as contributing to: • threats to self-esteem, to social relationships, to fulfillment of social roles, to emotional equilibrium, and, as causing work-related problems. Concerning psychological aspects of arthritis, Bradley (1985) mentions the effects: • low self-esteem and work-satisfaction, meaninglessness, family problems, learned helplessness (retarded initiative, impairment of 55 learning, anxiety and depression). Regarding psychology and chronic illness, Abram (1972) discusses the threat to bodily integrity resulting in conflict and anxiety; he refers to the defense mechanisms of: • regression, denial, intellectualism, projection, self-blame and other psychological reactions: • depression, over-dependency, and non-compliance. Zola (1986), regarding psycho-social associations with arthritis, suggests that: • lack of control, and a sense of insecurity, are associated with • poor compliance And Weiner (1985) cites the uncertainty associated with arthritis, as interfering with normal l i fe , producing: • dread, withdrawal, embarrassment, fatigue, 'covering up 1, slowness. On the effects of long-term illness, Bigot and Murricks (1981) write of a decline of intellectual functioning due to poor health, social isolation, and economic plight. And regarding the effects of aging, and of associated circumstances, Azzarto (1986) finds a direct relationship between enforced idleness and poor health; Thorne, Griffin and Adlersberg (1986) write that seniors report pain as being a major detractor from health and well-being, and Midlarksy and Kahana (1983) write that as limited opportunities and biological decline contribute to a common impression of seniors as dependent, helpless, and hopeless, older people tend to accept negative self-evaluations and exhibit patterns of learned dependency. Wells, et a l . (op. c i t . ) , emphasize that passivity and dependence 56 are reinforced by traditional, hospital-based models of care and have an erosive effect on social functioning and dignity, with the effect of increased physical and mental deterioration. There is l i t t le reference in the literature specifically to problems of seniors with arthritis in care. So, a firm statement on this subject cannot be drawn from these articles, but rather they are useful as providing pertinent information on several aspects of conditions overall for these seniors. They provide a sketch of the problematic/experiential milieu in which arthritis becomes a prominent, aggravating influence. A category of concerns that appeared most frequently in the literature was that of social roles and relationships. Blumenfield1 s and Cohen's discussions of arthritis and the elderly emphasize damage to self-esteem/self-image, and withdrawal from social roles/relationships, as well as accompanying emotional problems. These discussions are consistent with the other findings in the literature, suggesting that arthritis, regarding psycho-social-emotional problems, is a further aggravation of problems common among the elderly. Since the other sources in the literature reviewed here do not deal solely with seniors with arthritis, but include other groups and conditions, the information to be gleaned from the literature for the in-service training program will be limited to just that from Blumenfield and Cohen, et a l . , on the specific psycho-social-emotional problems of seniors with arthritis in care faci l i t ies, as in the section above: 'Concerning arthritis and the elderly'. On the matter of recommendations for care, Blumenfield (op. cit .) recommends services to enhance life-style and the pursuit of developmental tasks (see sections 1.4 and 3.3, above). Cohen et a l . (op. 57 cit.) suggest self-help groups. Bradley (op. cit.) writes that high levels of perceived social support are associated with effective coping and with low levels of distress. Abrams (op. cit.) recommends that care-givers understand and accept residents' angry, rejecting behaviour as unconscious adaptations to disease, in order to avoid aggravating residents' dependency needs. And from their broader perspective, of seniors in care in general, Wells, et al . (op. cit.) recommend seniors' involvement in programs and facility planning, as a response to the i l l s of deteriorating self-image and social involvement apparently common among the aged in care. As the Key Informant interviews considered the question of problems related specifically to the seniors' arthritis, two conditions were emphasized. Most respondents stated that seniors with arthritis tend to stay mentally alert and capable while they are trapped in a painful and immobilized body. They are isolated in facil i t ies where many people are mentally unsound - in "a sea of non-alert faces", starved for conversation, lacking mental stimulation, unrecognized by staff. Being removed from family and community, "into a place of disabled people, the message is: they are at the end of the road . . . just f i l l ing in time". The special chronicity with arthritis, with pain and immobility, was also emphasized, as the fluctuating nature of some kinds of the disease, and the inconstant level of activity and capability conflict with staff expectations and with facility routine. Residents feel guilt, anger, and frustration. They tend to blame themselves, and to feel blamed by staff for their inability, lack of cooperation, attention-seeking, etc. Another set of concerns often mentioned had to do with the dependency of arthritis sufferers. Here, too, conflict with facil ity 58 routine and staff expectations was emphasized. As one respondent said, "Health-setting priorities are cleaning and feeding; the routine is the priority". Others said that staff would help people eat rather than give them the time or find them the implements so they can feed themselves. People are fed and moved without being asked; "people are less and less a person in their own right". There is a loss of sense of competence and a real decrease in functional ability. The expression 'learned helplessness' was often mentioned. People feel inadequate, dependent, discouraged. There is a lack of any real power for them in their institutional environment. Respondents mentioned a sense of isolation and embarrassment at having to ask for help, and a struggle to maintain a sense of independence. Chronic pain was also emphasized, as being very fatiguing; "it curtails your l i fe , cuts off useful activities", leads to depression, defeat, despondency, feeling trapped, and eventually will alienate family members. Isolation was a factor also emphasized as, with chronic disease, people were left aside. Pain medication can produce grogginess, confusion, a sense of unattachment, and it can cause bowel problems, sometimes labelled as incontinence, and causing further self-isolation, through fear of smell, embarrassment, and humiliation. With the disfigurement and the pain, people tend to isolate themselves, withdraw, exhibit flat affect; their families often withdraw, being unable to manage with these conditions. Seniors with arthritis feel isolated as "people do not understand what I have to go through on a daily basis". There is a tendency for people with a negative outlook to be labelled, and isolated, as low self-esteem keeps other people away. 59 One informant used the expression "control issues", a good descriptor of concerns expressed by all respondents, as people with arthritis "feel out of control with the pain, and fear it will never go away". "The pain is uncontrollable by the resident, and the resident is under the control of the staff." It was suggested that people in their vulnerability seek to protect themselves by hostility, keeping people away, and so, have some sense of control. The "dehumanizing conditions" associated with the priorities of routine in facil it ies were mentioned again in this regard. The sense of loss was also a central factor in the responses - loss of limb, of independence, of self-esteem. Also, the stress of family breakup was emphasized as seniors are isolated from their families. And there is pain at the withdrawal of the family, with the senior seeing that the family visit is with a sense of obligation. The responses from the Key Informants as to what the care-givers could do in their daily work to help relieve the problems of seniors with arthritis were mainly focused on communication and companionship. Two ways were suggested: by receptive, friendly talk, while the staff person is with the residents, and, by arranging for the residents to meet and be near other residents with similar interests, abilit ies, and problems. The principle of both these ways could be identified as 'acknowledging and providing for the individual character and needs of each resident'. And that principle was manifest also in responses that recommended ways that staff could best complement residents' own abilities in accomplishing their own personal care, such as dressing, washing, eating, etc. In the matter of staff conversation with residents, several 60 respondents recommended the value of 'guided reminiscences', as one phrased i t . A staff person might arrange, say, for a resident to have photos from their earlier l i fe activity visible in the room, as conversation pieces. Staff might seek ways to encourage residents to speak of what they had done in their lives, how it was when they were small, and so on. The emphasis was on asking questions, mainly listening, getting to know them, and letting them get to know you, paying attention to people, finding out what they want and need. To arrange for residents to benefit from peer interaction, it could follow from staff listening to people, as above, that residents with similar backgrounds, interests, problems, and abil i t ies, could be introduced to each other. Staff could arrange for such people to sit together. It was emphasized frequently that people need opportunities to be engaged with others, to speak with others who are suffering similarly, to be heard, and understood. People need a place to legitimately grieve, to talk about the difficulty of dependence, to give support to others. The value of group support was emphasized in the responses, referring to a need for a venting of grief and hostility, and for rapport, familiarity, and trust. Regarding staff assistance with residents' personal care, it was emphasized that staff should avoid doing things 'for' residents without f irst asking: in moving a person, changing the room furnishings, feeding, dressing, and so on, one should ask f i rst . The questions were suggested: 'How is it for you today?', 'Can you do this today?', 'How can I help?' The "basic, l i t t le , respectful things" were recommended as being very important. It is a matter of staff keeping in touch with residents' level of health and ability, as it can change from day to day, 61 and adjusting their expectations accordingly. It was argued, that when a person says "pain", staff should believe them; it is some kind of pain. When the staff takes an interest in a resident's pain, one respondent remarked that often the resident might say, "Oh well, i t 's not that bad", but that must come from them. This is a matter of recognizing people as individuals, respecting privacy and personal modesty, allowing people to do what they can for themselves, helping when needed, but not taking over. The need was often emphasized, to allow residents time to attend to their own personal care, with staff assisting by finding implements (button-hooks, suitable table ware, etc.) so that residents can do for themselves. And, regarding eating arrangements, two respondents emphasized the importance of not seating neat eaters with messy eaters. It was also suggested that staff should encourage good relations with visitors, family and friends. Each respondent recognized and emphasized the good work in general done by care-giving staff, and the heavy work load, the demands of schedule and routine, the general difficulty of the work, and the lack of recognition for Care Assistants and Aides. Most had firm recommendations regarding the providing of an in-service training program, and regarding the systems within which residents and staff live and work. These recommendations are summarized in a later section of this chapter. 5.2 Convergent Analysis For the purposes of organizing the information gathered from the several sources for use in development of the in-service training program, the data represented by the lists given below was examined to 62 find those problem areas most mentioned, and given highest priority. Since the outcome of this process is to be a presentation to care-givers on the comprehensive subject, with a view to practical responses on the job, exact measures of frequency and rank are unnecessary. It is rather a matter of selecting items that are generally regarded as important, among the surveyed members of the community. The Key Informant interviews provided the most complete coverage of the research questions, so that some association between observed conditions and psycho-social-emotional problems can be drawn from them. Comparison of the l ist derived from the interviews with those from the other methods reveals that that l ist as presented here adequately represents the issues - the physical problems, and their psycho-social-emotional consequences, and with roughly similar orders of priority. The summary listings on the following pages, especially that from the Key Informant interviews, give an overview of what was gathered as information for the in-service. These data are applied in the following chapter, in the form of Propositions regarding the issues, to be used to develop the information content of the in-service. 63 Table IV: Summary Lists of Social-psychological-emotion problems of  subject population: Delphi Technique (in order of reported frequency of occurrence)* Nominal Group (priorized) • frustration, lack of mobility angry at self, impatient • fear, helpless, anxiety • loneliness, isolated • pain, stress • lack of understanding • boredom, lack of social l ife • lack of confidence, self-esteem • depression • peoples' indifference (put down) • no motivation/interest Discussions - Care Givers (clustered and ordered by frequency of mention) • depressed, sad, worthless, disappointed, low initiative hopelessness, loss, withdrawal, guilt re: dependence; suicidal) • anger: (disgusted, resentful, enraged) • afraid: (fear, helplessness) • frustration • isolated: (alone, no response no understanding, blamed) • better to die with dignity • (misc.): feel (physically) beaten, feel old, loss of control • frustrated • lonely • dependence • depression • burden on others || anxious • loss of self-determination || discouragement • isolated • helpless || lack of self-confidence • low self-worth || loss of dignity • loss of individuality • feeling un-cared for • afraid of being ignored • fear || angry • unbelieved | | emotionally stressed || worthlessness • embarrassed • avoidance of physical contact • hostile • bitter || denial • feeling desperate • physical problems (pain, stiffness, immobility, discomforts of treatment, problems with self-care) leading to: • social and emotional effects: (poor self-image/self esteem, withdrawal, loss, poor social relations/roles, depression, self-blame) Literature Review * Items of equal frequency are listed together, separated by double lines: 64 Table IV (cont.): Key Informant Interviews (The associations between observed conditions and emotional problems were made by the informants. The researcher clustered and labelled these responses, and they are presented here in decreasing order of frequency of mention.) cluster label isolation conflict with expectations and routine dependency chronic pain chronic disease control issues observed conditions • mentally alert - trapped in dysfunctional body • isolated from peer contact, families, community involve't • lacking mental stimulation, social interaction • fluctuating nature of arthritis, inconstant levels of activity and pain • enforced conformity with routine • loss of sense of competence, meaning, personal value • learned helplessness, power-lessness • fatiguing, curtails activities left aside, families withdraw pain medic1n produces: grog-giness, confusion, bowel problems disfigurement and pain causes flat affect, hostility lack of understanding loss of control with pain under control of staff and routine associated  emotional problems lonely, despairing, hopeless guilt, anger, frus-tration, self-blame, feeling blamed meaninglessness, helpless, inadequacy, discouragement, isol -ation, embarrassment depression, defeat, despondency, feeling trapped, alienated loneliness, embar-rassment, humiliation, low self-esteem hopelessness, hostility, vulnerability loss • of ability, family, social role, self-esteem grief, pain 65 The following list provides an overview of the suggestions from the various sources, as to what the Care Assistants/care-givers could do on the job to help relieve the problems of seniors with arthritis. • Complement residents' own abilities/be non-intrusive/maintain independence: • ask what the resident can do now (re: eating, dressing, etc.); • help where needed; provide implements; allow time for self-care; • use discretion/respect for modesty; • encourage activity; • Encourage socialization/self-expression; • staff talk with residents: • believe reports of pain, immobility • a caring, friendly approach, taking personal interest, in their past l i fe , etc.; • understand that hostile behaviour is not personal; • group involvement: • seat people together, matching of interests, etc.; • make visitors feel welcome; • seat neat eaters together. 5.3 Recommendations offered by Key Informants regarding design and  presentation of the in-service Although it was not strictly within the purview of the research questions of this project, to gather opinions and recommendations from informants as to the design and method of presentation of the in-service training program, nonetheless., the Key Informants did have opinions and recommendations to offer. The respondents' suggestions for the content of the in-service have 66 been summarized above, as suggestions regarding what the care-givers could do in their daily work. Further, on matters of content, it was suggested that training in basic communications skills could be included in the sessions, emphasizing listening and conversation, especially with respect to the language and cultural differences common among staff and residents. With regard to the format of the in-service, a strong overall tendency among the Key Informant respondents was to urge an experiential basis. Role-playing was suggested, so that participants could take part in realistic problem solving during the session. It was suggested that seniors with arthritis could be included as active participants, and that staff could have limbs de-mobilized by bandaging, or that they could sit in wheelchairs during the session. The most frequently-offered suggestion was that care-givers should be asked what they see as problems, what they need from the in-service, what they would like. As one respondent put i t , "Without this, i t 's dead." It was said that the in-service should address coping skills and problem-solving techniques that the care-givers would need on the job. And considering the in-service as a group work session, one respondent recommended that, "along with didactic course content, [the in-service should] give Nursing Assistants opportunities to talk among themselves about what it feels like when certain things happen, and how they deal with i t . Some would have positive attitudes and express themselves and buoy the others up. This is what group work is about -finding the natural strengths within the group and recognizing the things that are automatically going to occur, and learning how to make the most 67 of them." It was said also that the in-service should offer an alternative to the medical model approach, by encouraging the participation of residents and staff in planning and decision-making. Another respondent, with extensive experience in staff-training, said that, "in-service training does not work well with highly-educated nurses, and care-givers who can hardly understand the language, in the same session. It is difficult to address these two groups at the same time, and with the same information. This respondent said that she always divided them in her training sessions. Patient care aides' sessions were much more basic, practically-oriented; for instance, to increase their understanding of emotional needs, she would bring in cases, not theories, i .e. , a real person in their care, for them to think about that person's needs. The most extensive recommendation regarding an approach to in-service training was offered by a professional who was strongly recommended as a respondent by two of her colleagues, who emphasized her considerable skil l and understanding in working with care-facility staff. Among her key points were: "If you go in to do an in-service, one of the things you have to go in knowing is that you can learn more from them than they will ever learn from you, and, unconsciously, they know that." Also, within the constraints of a ninety-minute in-service, she recommended that "All you can do of value would be 'experiential' - use fantasy, make it personal." She recommended an approach to guide the in-service participants to think of themselves when they will be elderly, and if they were disabled with arthritis - to ask themselves how they would like to be taken care of, how they would feel, what they would like 68 their care-givers to be like, and, then, "How could we as care-givers be the way you would like your care-givers to be? How can this happen?" 5 . 4 Remarks by Key Informants from a systems perspective Somewhat further afield, in considering the problems of seniors in care with arthritis, most of the Key Informants offered reflections and recommendations regarding the context, the system, in which care-givers and seniors find themselves together. It was generally recognized that Care Assistants are of basic and extensive importance in the faci l i t ies, regarding the well-being of residents, and also that they are not recognized for the value of their work, and are given l i t t le incentive to upgrade their ski l ls , especially financial incentives. It was emphasized that care-givers need a lot of support, and recognition of what a difficult job they are doing, and how that job is the single most important job within the whole hierarchy. They are at the front line; they carry the burden for the rest of society, society having decided that somebody will look after these people. The Care Assistants provide the basic necessities. One respondent emphasized the problems associated with the primacy of routine and the lack of recognition for work done. The routines of cleaning and feeding are priorities, and issues regarding emotions and independence are low priority. And, overall, care facil i t ies are relegated to a role, within the medical system, of simply maintaining the old and infirm. The respondent referred to a program, by contrast, of outreach to facil i t ies with a team of specialists visiting bi-monthly, and to whom staff must report. With that contact, attention, consultation and supervision, facility staff performed better, with 69 increases in interest, concern, and improvements in case management. This is consistent with the frequent recommendations that staff need attention and recognition for their work. It was suggested that the Arthritis Society might take such a role in the care of residents with arthritis. The formation of support groups was also recommended for both residents and for staff, regarding special problems and needs. People need a chance to talk about the institutional system and all that that incorporates, among safe others. Care-givers need mutual support and rewards, and recognition from management. Care Assistants are the ones who should be getting more training. If they are supported and feel competent, and if they are consulted, naturally their work will improve. And, one respondent recommended a residents' committee, to talk among themselves and meet regularly with management. Another urged that residents should be included as members of the care teams, participating in consultation; "So often we make plans for people, and they are sitting outside the door as if they were not even part of what was happening, and they need to be. They are a very integral part of deciding what to do. They should be there at all times, discussing what is happening, what they want, and what should be done. They should be inside the circle." A respondent stated that staff and residents have common problems, with de-humanizing conditions in faci l i t ies. She referred to a colleague who, "role-modelled caring and supportive behaviour as an administrator; [who] also had clients that she cared for each day . . . was in touch with client needs, and she cared for staff in the way that she expected them to care for the [residents]". This respondent urged that good management should come from the top down. 70 Insufficient staffing, and excessive work-loads for adequate personal care were also mentioned as institutional problems. For the resident, the results are the inflexibility of the routine, and the lack of individualized attention. 71 Chapter Six  Recommendations, Propositions; Conclusions 72 6.1 I n t r o d u c t i o n This chapter begins with an outline of the format of the Ohio Teaching Plan, followed by general recommendations regarding approaches to, and methods for, the in-service including the Social Work component, and finally, the chapter provides a set of propositions to be adapted as teaching content to the in-service program. These recommendations and propositions have been generated out of the data collected from the literature and from the various respondent groups. The Ohio Teaching Plan is organized according to a set of "Behaviour Objectives". Each objective is defined as a completion of the sentence beginning: "Upon completion of this session, participants will be able to . . . " (See: Halloway (1985), and Appendix Two.) To achieve each objective, a set of questions and topics is provided, under the heading "Content". For each objective, a "Teaching Method" is designated (lecture, discussion, display, etc.), and, "Resources and References", and "Evaluation Method" are given. Also, a set of Teaching Notes is provided; it includes particular points of information and issues to be presented and discussed, for each objective. 6.2 G e n e r a l R e c o m m e n d a t i o n s a s t o M e t h o d s t o b e u s e d i n t h e t r a i n i n g  p r o g r a m The following set of recommendations for the Social Work component of the teaching program emphasizes and encourages the active participation of the course "participants"; this is in keeping with recommendations especially from the Key Informants of this research. The Ohio Teaching Plan combines participation in the forms of 73 brainstorming, discussions, and practice sessions, with lectures, demonstrations, and visual displays. It is here recommended, that, as possible, active participation methods be consciously facilitated as group work - recognizing natural strengths within the group, and making the most of them. This could be demanding, as an approach requiring some flexibil i ty of the program, and adaptability on the part of the presenters/facilitators. But, it would likely be rewarding, encouraging participation, and actually modelling one of the prime lessons recommended by respondents regarding social-psychological-emotional needs; that is , that listening, and responsiveness to individual needs and priorities should not be over-ridden by adherence to schedule and routine. It is also recommended, that during the course session, after a general introduction to the subjects and methods of the program, and after people have had a chance to settle in and be comfortable with each other, then, the participants should be asked what they see as being problems for seniors with arthritis in their care; what are problems that staff must deal with in their daily work? And, what do the participants need, what would they like to get from the in-service? The presenters could make a list of these responses and post it for reference during the session. Whenever possible, active, experiential methods should be used. Role-playing and fantasy were recommended by respondents, with guidance regarding staff coping skills and problem-solving. Participants should be asked to consider real situations with people they know and work with in their faci l i t ies, and they should be given opportunities to talk among themselves about how they feel when dealing with certain problem 74 situations, and about how they do deal with them. Along with information regarding arthritis and associated problems, and regarding ideas for responses, also, an important, pervasive, and durable benefit that could be got from this in-service, by the Care Assistants, could be a heightened awareness of their own knowledge, and, their learning of openness to discuss and to solve problems. There is a saying current in community development: "If you give someone a f ish, you feed them for today. If you teach them how to fish, you feed them for a life-time." Several respondents emphasized that Care Assistants have a major role in faci l i t ies and have much to offer, but are l i t t le recognized or supported. This in-service, emphasizing, encouraging, and responding to participants' contributions, could serve as a morale-builder, a drawing-out, recognition, and encouragement of Care Assistants' own resources and initiatives. This is in keeping with the example offered by one respondent, of the administrator who cared for her staff in the way she wanted them to care for the patients. There is opportunity here, for the presenters to teach by example. 6.3 Propositions: For the information content of the training program * There are common social-psychological-emotional problems among  seniors in care, associated with the symptoms of arthritis. Many respondents reported that physical disorders with arthritis interfere with self-care and with socialization, leading to poor self-image and isolation, with accompanying frustration and depression. Further, arthritis presents a special hindrance to developmental tasks of 75 late l i fe , which include: confirming a sense of self-worth, a shift in emphasis from physical to mental and social qualities, and a dealing with death, through emphasis on one's contribution to others. It is emphasized that arthritis presents special problems itself , and that it also brings about an aggravation of many of the common problems of the elderly. * A sense of self-reliance and of social integration are essential to  wel1-being. " . . . lack of participation, inactivity, and dependence have an erosive effect on social functioning and the sense of human dignity, leading to apathy and further physical and mental deterioration." (Mechanic, 1979) A sense of well being and social integration often have the effect of de-inhibiting the immune systems and leading to remission in some physiological disorders (see section 3.3 above). Sources also report a common "vicious circle" of a person having a poor self-image, causing others to withdraw, leading to the person feeling even more isolated and worthless. * Limitations on movement and so on the activities of daily l ife  affect social-psycholoqical-emotional conditions. With arthritis, the ability for self-care, such as: washing, dressing, eating, and toilet is reduced. People with a physical disability often are moved, dressed, fed, etc., without being asked if they can do it themselves or would like help. Respondents report that this leads to a loss of pride, feelings of helplessness and dependency, and to "learned helplessness", with residents feeling inadequate, 76 dependent, and discouraged. * There are common social-psychological-emotional effects of chronic  pain. Pain is fatiguing, curtails activities. Families withdraw from on-going complaining or ill-humour. People often do not understand that the pain is real. The person suffering the pain of arthritis often feels out of control, defeated, and trapped. Withdrawal, isolation, negative attitudes, anger, and depression all result from chronic pain, according to respondents and literature sources. * There are common social-psychological-emotional effects of  medication that is given for arthritis. Medication induces grogginess, confusion, and a sense of un-attachment, all leading to isolation. Some medications also cause bowel problems in residents, leading to embarrassment, humiliation, and self-i solation. * There are special problems related to the fluctuating, unpredictable  nature of some kinds of arthritis. As the pain and disability can vary unpredictably, residents have difficulty with making plans (shopping, outings) and with compliance with orders and with facil ity routine. Common results are: frustration and despondency about social activities, disbelief on the part of staff, a sense of guilt, anger, and self-blame, and a feeling of being blamed for inability, lack of co-77 operation, for attention-seeking, etc. . . . This failure of understanding further aggravates the senior's sense of isolation, and low self-worth, according to the respondents and the literature. * There is an overall sense of loss common among seniors with  arthritis, due to the cumulative effect of the above conditions and their  results - loss of independence, of family and social involvements, of  meaning and value in l i fe . Respondents report: grieving, flat affect, and psychological pain. And, isolated and grieving elders, rather than being given what they lack in social integration and personal support, are often given medications to dull their grief. * Two basic issues can be identified, regarding seniors in care, with  arthritis: 1) Control issues (re: self-sufficiency and independence);  and, 2) Socialization issues (re: integration with others, a sense of  meaning and value in l i fe) . These are issues for many seniors, but the effects of arthritis often cause problems in these areas of concern. 1) Control issues: Chronic pain is out of control, gives a sense of helplessness. Inability for self-care undermines one's sense of competence/confidence and independence. Conflict with routine of the facil ity and problems with compliance are challenges to self-sufficiency, and to a sense of control over one's own affairs. 2) Socialization issues: The senior with arthritis often is mentally-alert, but isolated, with the mentally-disabled, and lacks mental stimulation. The irregularity of pain and disability cause disbelief among others, resulting in a greater sense of isolation. There 78 frequently is difficulty in participating in activities. Needing more time to do things, the senior with arthritis is often out of step with others. * Certain aspects of the behaviour of seniors with arthritis can be  understood as coping strategies. Seniors suffering the above conditions may show various forms of hostility (anger, withdrawal, etc.). This can be an unconscious attempt to cope with conditions, for example, seeking a sense of control in one's l i fe by keeping people away. * Two fundamental principles of care can be identified, following the  two basic issues, as above: 1) support and encourage independence; and  2) support and encourage social integration. The first could be implemented, according to respondents' recommendations, by staff asking before moving, feeding, dressing, etc., a resident, and by the provision of appropriate mechanical aids, and the allowing of sufficient time for the residents to do for themselves. The second principle could be implemented by two means: staff conversation with residents, and intentional arrangements by staff for seniors to have greater involvement with their peers with similar interest. In the way of staff conversation with residents, guided reminiscences were strongly recommended, with staff encouraging and listening. This closer familiarity, then, could lead to staff introducing seniors with similar backgrounds or interests. Also, the need is emphasized, for self-expression, venting of emotions and concerns, to responsive, sympathetic listeners. Finally, it was recommended that arranging for seniors to talk together would provide 79 valuable opportunities for them to be of help to each other. Conclusions The research found general agreement among the sources (respondents, groups, and literature) that seniors in care with arthritis do have special social-psychological-emotional problems and needs as a result of the clinical manifestations (primarily pain and disability) associated with the disease. And it was generally held that Care Assistants, in their close daily involvement with facility residents, are in a unique position to respond to those special problems and needs. It was also emphasized that the Care Assistants, generally speaking, have a heavy work load and relatively l i t t le freedom within the system of routines and schedules to respond to individual residents' needs, and also that they are l i t t le recognized for the value of their work, and so, they are given l i t t le incentive or opportunity to develop skil ls or expand their involvement with facility residents. This project addresses that situation by developing and providing an in-service educational program that is sensitive, according to the "General recommendations as to method" (section 6.2, above), to the concerns and priorities of the Care Assistants, as well as to those of the residents. The reader is referred again to Bartlett's principles of education (1985), where it is emphasized that, in education for behavioural change, "Knowledge is necessary but generally not sufficient.", and "enhancing the (learner's) social support" also is recommended. The in-service program could be presented in such a way, incorporating the above recommendations, that it would serve as a recognition and a support to the Care Assistants in their work. 80 This present research was an exploratory study of the problem area, and made a good beginning by its mapping of major concerns. Since the residents and the Care Assistants are at the centre of that area, and since their experience and interactions with one another are most precisely the subject of concern, therefore, it is recommended that any further related program developments include more than indirect information from third parties, and should immediately involve seniors and staff (more effectively) in the needs assessment and response development process. Future research in this area could include an implementation and evaluation of models of care such as those discussed by Wells, Singer, and Polgar (1986), being "An Empowerment Model in Long Term Care: A partnership of residents, staff, and families", and by Midlarsky and Kahana, shifting the emphasis to "helping by the elderly, in place of the almost exclusive emphasis on service provision to the elderly" (1983:10). Recognizing seniors' capabilities and allowing them and supporting them in management of their own personal affairs and responsible participation in their social environment would address basic problems/needs recognized in this study. That is , the need for a sense of personal capability, and of social integration, or value in the group. As an example of possible future research arising from the findings of this study, groups or committees comprising facility residents with arthritis, their families, and staff, could be developed (according to methods described by Wells, et a l . ; 1986). An assessment could be carried out by staff and residents, of the Social Climate in the facil i ty as they saw it at the time, and as they would like it to be, using an established assessment instrument. Social-psychological-emotional 81 ratings scales, and tests for clinical manifestations and for physiological evidence of arthritis could be included as pre-test procedures. Participants' ideas for improvements in conditions could be self-assessed in consultation with Facility administration, for feasibil ity, and implemented as possible. Post-tests on the same variables could be included in the evaluation of the project. An interesting area to watch would be in any correlation between changes on psycho-social variables and changes on clinical or physiological variables. Facilities without participatory programs could serve as controls. However, that is a large project for a future time; for the moment, the next steps in this present project are f i rst , to use the information gathered and generated in this research to develop the Social Work component to augment the Ohio Teaching plan, and then, to pilot and evaluate the in-service teaching program. The course evaluation forms (included in the Ohio plan) completed and returned by participants will be important feedback. Also the Ohio plan includes methods for presenters (and others) to evaluate the individual methods used to reach each educational objective. With respect to the General Recommendations, above, promoting active staff participation in and contribution to the in-service session, it could be a valuable aid in developing the effectiveness of the in-service, if the evaluation of the program and presentation gave special attention to the interest and involvement of "participants". Underlying these specific orientations is a principle of democracy -allowing for and promoting citizen involvement in the management of the institutions that are major factors in our lives. 82 As a final concluding remark, the writer recommends this study for its humanity. People's experiences and opinions were sought directly, as much as possible in the respondents' own words and own ways of speaking. And those thoughts have been carried faithfully on paper to the present form, in this report. 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Getting Well Again: A step-by-step self-help guide to overcoming cancer for patients and their families. New York; J.P. Tarcher. Solomon, G.F., 1969. "Emotions, stress, the central nervous system, and immunity", Annals of the New York Academy of Sciences; 164:335-43. Southam, C M . , 1969. "Discussion - Emotions, immunology and cancer: How might the psyche influence neoplasia?" Annals of the New York  Academy of Sciences; 164:473-75. Stein, M., R.C. Schiavi, and M. Camerino, 1976. "Influence of brain and behaviour on the immune system", Science; 191:435-39. Steele, F., 1975. Consulting for Organizational Change. University of Massachusetts Press, Amherst. Thorne, S. , C. Griffin, and M. Adlersberg, 1986. "How's your Health?: Well seniors' perceptions of their health and well-being." Gerontian; 1986:15-18. U.S. Department of Commerce, Bureau of the Census, 1985. Statistical  Abstract of the U.S., 1985. United Way of the Lower Mainland, 1985. The Lower Mainland of the 86 1980's: An Environmental Scan. Vancouver; United Way Research Services. Watkins, J .G . , 1978. The Therapeutic Self; Developing resonance - key to effective relationships. New York; Human Sciences Press. Waxier, N.E., M. MacEntee, B. Morrison, R. Weiss, n.d. "Oral health of institutionalized elderly: A problem of age or social experience?" Unpublished manuscript. Weinstock, C , 1977. "Psychodynamics of cancer regression", Journal of  the American Academy of Psychoanalysis; 5(2): 285-86. Wells, L.M., and C. Singer, 1986. "An empowerment model in Long-term Care: An evaluation". Paper presented at Canadian Association on Gerontology, 15th Annual Scientific and Education Meeting, Quebec City. Wells, L.M., Singer, C , and A.T. Polgar, 1986. To Enhance Quality of  Life in Institutions: An empowerment model in Long-term care; A partnership of residents, staff, and families: Guidelines. Faculty of Social Work; University of Toronto. Wiener, C.L. , 1985. "The burden of rheumatoid arthritis: Tolerating the uncertainty". Social Science and Medicine. 9:97-104. Zola, S.K., 1986. "Reasons for non-compliance and failure of the elderly to seek care"; in, Moskowitz and Hanz, eds.: 72-84. 87 Appendices 88 Appendix One  Issues and questions regarding a field-practice 89 The opening section of this Appendix is a simple case study of a student's field-practice with a community agency. Issues are addressed, that might be of interest to other students who are anticipating a similar involvement. A set of questions is provided in the second section, as guidelines to assist a student in assessing a prospective field placement. Entering the field placement: Experiences and issues At f irst approach to the field practice, the student was presented with an opportunity to assist with the implementation of a project that had been developed in response to a need identified by the agency. The project had been developed according to both agency priorities and accepted models of research, and it was supported by agency personnel and resources. The project was to be implemented under the guidance of a Field Instructor who was experienced in research and supportive of the project. The project had clearly defined practical applications answering the identified need. Since the student's general area of interest was in community work and social planning, the above characteristics of the project, combined with its basic research methodology of consultation with a variety of concerned people in the community, made this an attractive placement. In considering each of these characteristics of the project, certain issues can be identified that are of interest in assessing the advantages and disadvantages of such a placement relative to a student's needs and priorities. As a need had been identified by an agency committee, the project was supported from within the agency, which was certainly an advantage to the incoming student, who therefore did not have to gather such support 90 while being relatively unfamiliar with and unknown to agency personnel and systems. But at the same time, the identification of a need is already one large step into a project, and this is an important step, in which it could be to the student's advantage to participate. After recognition of the problem, an analysis of the situation could reveal the needs, implying a choice of possible responses. Comparing these with available resources and projected costs and benefits, the worker or student could develop recommendations, and appropriate courses of action could be chosen. Involvement in such a procedure could provide extensive benefits for the student in the practical experience that could then be carried into future work. In reality, any agency works according to its own mission, objectives, resources, and role in the community, and any project undertaken or supported by an agency is likely to be determined accordingly. An agency acts according to its areas of interest and resources, and such factors will have an effect on the nature of the problem areas that are recognized by the agency, on the needs that are identified within these problem areas, and on the responses that are conceived and accepted as appropriate for the agency to undertake. This can be compared to an 'ideal' model: with ideal objectivity and unlimited resources being applied to a problem analysis and development of recommendations, a course of action might be chosen that perfectly satisfied the unmet needs that constituted the problem. Community work, however, is not pure research or ideal speculation. A student might wish to examine the advantages and disadvantages in the matter of the agency's acceptance of and influence on the project. The work should benefit from agency support, but also the special 91 approaches to the problem that are proposed by the agency, reflecting its own nature, may not match with the student's priorities. As the project design in the present instance had been developed for the most part prior to the student's involvement, according to agency priorities and accepted models of research, the student had some assurance that the project design was of a standard that would be acceptable both within the agency and in the wider community. Thus, a good deal of work in developing such an acceptable project design had already been completed. There was obviously here a saving of time and effort for the student. In this particular instance, without such developments having been accomplished prior to the student's joining the project, it is questionable whether this project would have been feasible for a student to undertake during the time limits of the school program. However, some questions arise at this point, regarding the role that the student is to play in the project. If an agency required that a student assist in solving a certain problem, with the student investigating the nature of the problem and developing proposals for solutions, the student would be taking the part of an outside consultant, responsible to the agency, but with a relatively free hand in the process of problem assessment and action recommendation. The extent and nature of the student's involvement in this regard might vary inversely with the availability of relevant expertise within the agency. Referring back to the ideal example mentioned above, a student's involvement might begin at the stage when a problem had only been identified; then, a student could act as a consultant, bringing his or her own experience and the resources of the school and faculty to the situation, to develop a proposed response to the problem in consultation 92 with the agency. When the needed expertise is available within the agency, the role of the student could vary from that of the consultant, to that of a research assistant working to implement a previously, fully-designed project, under the direction of agency staff. In both cases, and in the variety of possibilities in between, the student of course would have the benefit of learning by doing; in the one case, it might be a matter of learning through exploratory involvement in a broad range of activities from analysis of the problem through implementation of a solution, with all the hard lessons that one might expect as a f irst-time consultant. In the other case, it might be a matter of learning through working with a Field Instructor who is familiar with the agency, and with the people, the resources, and a wealth of other factors that could affect the progress of the work and achievement of objectives. In this particular instance, the working relationship shared by the student and the Field Instructor was in the middle ground, including aspects of both of these possible cases. The project plan had been developed, and the in-house expertise was available, but also, in the Field Instructor, was a willingness to discuss and negotiate with the student on several key issues regarding the project conception, design, and implementation. The student took opportunity to crit ically consider several aspects of the project design and to propose alternatives. And he, and the project, had the advantage of informed responses from the Field Instructor as to the rationale behind design decisions, about difficulties and benefits that could be expected, and resources that would be available, if alternative measures were attempted. In short, the student had the overall advantage of the freedom to propose revisions as he wished and to give them a 'dry run1 as it were, 93 in the testing ground of the Field Instructor's experience and understanding of the setting. Thus, it is likely that difficulties that might otherwise have resulted were avoided in the implementation of the project. The present field practice was in some ways an instance of 'creative confl ict ' , as the student came into the project with some community work models in mind, that were outside the range of possibilities for this project. There was much discussion and negotiation between the student and the Field Instructor on these issues, as the student's ideals were adapted to the realities of the situation, and as his perspective and recommendations contributed to the effectiveness of the work. The benefits of such a placement can be expected to depend much on the quality of the working relationship between the two parties. A spirit of cooperation, friendly and supportive attitudes on both sides, seems essential. It could be a challenge for the student to assess the prospects for such a relationship, during introductory meetings with the agency. The set of questions offered below suggests ways to make such an assessment. Assessing a prospective field placement The questions assembled here could be used as a guide for a student to assess an agency and project as a prospective field placement. Many ideas behind these questions and considerations were found in the literature on consultancy. The reader is referred to the Bibliography for sources of further information (Schein (1969); Gray (1985); and Steele (1975)). These questions are organized here under three headings: 94 1) The nature of the work itself; 2) The roles of the student and the Field Instructor in the work; 3) The environment and the context in which the work is to be done. 1) The nature of the work itself A field placement might be understood as rating on a scale with 'performance' at one end, and 'learning' at the other. A performance task would be of a kind of work that the student already knew well how to do. The placement would then be an opportunity for some concrete accomplishments and recognition of abilities. At the learning end, the achievements might not be so obvious: an exploration of unfamiliar issues or systems, a development of skil ls and access to resources, including a professional network, new to the student - these might be the prominent accomplishments of the work. And, these conditions might be considered in light of the student's current priorities, perhaps with respect to an overall strategy of career development. In particular cases, it might be recognized that certain tasks or aspects of the project might be familiar, easily done by the student, and so ranking near the performance end of the scale, while other features might require new learning. In such cases, it could be a question of the mix or balance of those conditions in the project, and whether that mix f i t with the student's priorities. In some cases the student might be interested in the project overall, but be dissatisfied with some aspects of i t , which could provide an opportunity for negotiation, towards adaptation on the part of both the student and the agency. 95 A projection should be made as to the demands of the work on the student's resources of time and ski l ls . It could be helpful in the student's preliminary assessment of the placement, to develop a time chart of tasks. This could amount to a week by week projection of the student's activity for the extent of the school year. The following questions might be of help to the student, considering a prospective field placement with these issues in mind: What could the student learn or achieve through this work? Does the student want to learn/achieve this now? Is it timely for the student now to develop skills or resources, say, to keep in step with new developments in the student's field of interest, or would accomplishment of a high profile job well done, demonstrating the student's proven abil i t ies, better assist the achievement of the student's short-term or long-term objectives? Is the project a part of a comprehensive program for the improvement of the overall functioning and organization of programs or services? Or, is it defined as provision of services, limited to a small sphere of influence, or to a short period of time? Will the project be an accommodation to working within the existing system, or will it attempt to improve the system, or to develop new approaches, as alternatives? Does the project approach the real basis of the problem at hand, as the student sees it? Does a short-term or closely-focused approach seem the best response to the situation, or are deeper or wider changes more in keeping with the student's understanding of the situational needs? How does the prospective project match with the student's priorities in each of these considerations? What specific, measurable results must be obtained for the student and the agency/Field Instructor to be satisfied? In cases where the student is interested in the project, but is dissatisfied with some aspects of i t , how much of the project, and what aspects of i t , are changeable, and to what extent? -to suit the student's needs and priorities? 96 What are the time requirements? How does the project schedule f i t with the student's schedule of other tasks (course work, wage-earning, etc.)? What work has previously been done in the preparation of the project? What remains to be done, and what is optional or flexible? Regarding particular tasks and overall organization, what skills and knowledge will be required of the student? Does the student have sufficient background, or will i t be reasonable within the project and school year limits for the student to train, or to access appropriate resources to fu l f i l l the project needs? 2) The roles of the student and of the agency/Field Instructor in the  work It could take some time before the working relationships between the student and other people working on and around the project settle into a steady pattern. But an early assessment of the possible working relationships could be helpful. Some possible kinds of relationships, as discussed in the consultancy literature, are: 'teacher/student' (in some cases, the student might act as teacher, i .e. , as an important resource to guide and inform a project); 'supervisor/labourer'; 'co-researchers'; ' initiator-designer/implementor1; 'monitor/performer1 (here, again, the student could take either role; for example, if the project were evaluation research, agency personnel could be performing, with the student monitoring); similarly, the student could act as 'detective', seeking information towards a problem solution. The student might be seen also as a 'talisman', with the role of supporting or legitimizing a supervisor's pet project or pre-determined "solution". Or, the student as consultant could act as 'barbarian', that is , one who does not have to 97 be so polite as other people within the organization, but who can speak on such normally sensitive issues as salary, performance, authority, etc. The student seen as a resource valuable to the project might be expected to provide resources of the school and faculty for the benefit of an agency project. One might avoid problems from the outset by being clear as to assumptions and biases, and regarding relevant gaps in one's own skil ls and knowledge, and regarding the nature of the f i t of these conditions on the student's part, with their corresponding factors and needs on the agency's part. During the early weeks in the school year, while the student is challenged by the need to adjust to many new systems and environments, such introspection and examination of prospective projects might require an extraordinary effort of understanding. But it can only help to explore early in the negotiations, what is expected and what is possible. Schein (1981) emphasizes the importance of a first exploratory meeting between the consultant and client (here, the student and agency representative/Field Instructor). He refers to this meeting as a f irst major diagnostic step in establishing a relationship. The following questions might be helpful in assessing the nature and the possibilities of the working relationships in the placement. To whom does the student report? What are this person's expectations regarding the student's work and what are their capabilities of supporting it? How does this person conceptualize the relationship? What will be the costs and benefits to the student? Is the student's work likely to be of any real help to the organization? How? 98 Is the project going to be of interest to the student? How much, or what aspects of the project can be changed to suit the student's needs and priorities? What control does the student have, or what influence in decisions, and in what domains? - project objectives, methods, participants, distribution and application of findings? In what aspects of the work or of the relationship is there a match or mis-match between the student's and the agency's/Field Instructor's biases, expectations, and requirements? On first meeting with an agency representative, what is the apparent degree of openness, the spirit of "enquiry, and authenticity of communication of the agency representative? Is there a genuine willingness to explore, to explain, to answer challenging questions, and to deal with sensitive issues? 3) The environment and the context of the work Schein (1981) suggests also that during the f irst contact with the client agency, while dealing with the receptionists, office assistants, while waiting for an appointment, etc., the consultant/(student) should assess the internal working environment and relations within the agency, regarding cooperation, communications, etc. Other important questions are concerned with how the project f i ts in the organization: the attitudes towards, and expectations of, the project and its outcomes, the genuineness of the enquiry, and the f i t of the project within agency priorities. The following questions treat these issues in some detail. Are people relaxed, friendly, cooperative? Do there seem to be good internal relations among personnel, and among departments and levels of administration? Is there evidence of any internal conflicts or divisions? What is the evident general morale? 99 Are communications within the organization prompt? effective? Who wants the work done? Who initiated the project? What is this person's record regarding success of their ideas? Who supports the work? Does anyone really want it done? Or, is the project primarily a show of some kind? Is the contact person/Field Instructor really interested in the project? Why? Is this a genuine research, planning, or development project, or is it a promotional, profile-raising project? Do staff and management expect results to be useful, or is the project intended mainly to advance the organization's administrative interests, or someone's personal, professional interests? What are the attitudes of staff and management whose support and cooperation is needed? Are there groups or people within or outside of the organization who do not support, or who oppose the project? Will these attitudes affect the project or the student's work? What is the apparent willingness within the agency to explore and investigate the problem, the area of concern, to learn what is really happening, and develop a true understanding of what the conditions are - before proceeding with a "solution"? Is there evidence of willingness to accept the outcomes of the work? An openness to change? What is the importance or priority of the project for the agency? (If this is a high priority project for the student, being central to a degree program, and if it is a rather low priority of the agency, or for the Field Instructor, there could be problems here for the student.) What resources will be available, such as information, funding, equipment, work space, and personnel with the necessary sk i l ls , knowledge, and contacts? How does the project f i t with the overall plan of the agency, regarding the agency's mission, objectives, strategies, and other projects? Is the project an integral part of a larger program? 100 What other projects are being undertaken currently, that might be in conflict with this project for staff time, and interests, and other resources? What flexibil ity is there, to adapt to the student's needs and priorities? Is there a history of other, similar projects in the agency? What were their successes and failures? And what do people therefore expect from the present project? Is there a match between the project and the student's professional and ethical standards? Are there hidden agendas or objectives? Are there important differences between the student's and the agency's values? Will this project have results that will disadvantage some, for the advantage of others? How does the student f i t in with the overall pol i t ical , professional, competitive milieu of the organization and its work? Does the student want to play this role? Overall, there are few absolutes here. For the most part, i t is a matter of the agreement or the match between the student's needs, objectives, and priorities, and those of the project and the agency. In the present academic program, given course-work and other program arrangements, it seems unlikely that a student could take the time to do a thorough exploration of all of these issues and questions with an agency during the very early weeks of the school year. However, if such an exploration and analysis could be done for course credit, a student might have opportunity then to do a more thorough job of i t , and to find or to develop a practice-research placement that was well suited to the student's needs. The student could develop a good, early understanding of the work, the relationships involved, and the overall context and environment, to make a soundly based decision whether to participate in 101 any one project. In the case that the student decides to undertake a thorough, early investigation, already then, a strong beginning could be made in the field-practice, in understanding the setting and the nature of the task. Appendix Two  A Model Teaching Plan for Nursing Assistants  Caring for Arthritis Patients  In Ohio's Nursing Homes Excerpts A MODEL TEACHING PLAN FOR NURSING ASSISTANTS CARING FOR ARTHRITIS PATIENTS IN OHIO'S NURSING HOMES 1985 PREFACE This Model Teaching Plan r e s u l t e d from c o l l a b o r a t i v e e f f o r t s by the A r t h r i t i s Program, D i v i s i o n of Chronic Diseases, Ohio Department of Health, and the Nursing Home Area Tr a i n i n g Center of the U n i v e r s i t y of Akron, to address the t r a i n i n g needs of nursing a s s i s t a n t s working with a r t h r i t i s s u f f e r e r s i n Ohio's nursing homes. Of the t o t a l number of nursing home residents i n Ohio, estimated at 80,552 (estimate based on the t o t a l number of beds l i c e n s e d by the Ohio Department of Health as of June, 1985), approximately one-third of a l l residents, 26,860, can be expected t o have some form of a r t h r i t i s , ranging from moderate to severe, or i n combination with other c o n d i t i o n s , such as a r t e r i o s c l e r o s i s . Recognizing the important r o l e played by nursing a s s i s t a n t s i n helping a r t h r i t i s p a t i e n t s to maintain good f u n c t i o n a l a b i l i t y and maximum m o b i l i t y , t h i s t o o l has been developed f o r use i n meeting t h e i r t r a i n i n g needs by Nursing Home Administrators and Inservice D i r e c t o r s , and the Nursing Home Area T r a i n i n g Centers. I t may a l s o be e f f e c t i v e f o r t r a i n i n g home health aides. The model was developed and p i l o t - t e s t e d e x t e n s i v e l y from March through June, 1985, i n an e i g h t county area of Ohio. A t o t a l of three hundred and f i v e p a r t i c i p a n t s from forty-two nursing homes attended t h i s four hour i n s e r v i c e program. The eva l u a t i o n r e s u l t s were very p o s i t i v e , i n d i c a t i n g increased a b i l i t y and confidence on the part of nursing a s s i s t a n t s i n c a r i n g f o r t h e i r a r t h r i t i s c l i e n t s . OVERALL GOAL Improve the care provided to nursing home residents i n Ohio who have a r t h r i t i s through the prov i s i o n of an i n s e r v i c e a r t h r i t i s education program designed to increase the l e v e l of s k i l l s of nursing a s s i s t a n t s . OBJECTIVES To provide general information on a r t h r i t i s which enables the nursing a s s i s t a n t to: - recognize the impact j o i n t immobility has on a person's a b i l i t y to perform d a i l y a c t i v i t i e s ; - i d e n t i f y j o i n t s commonly affected by a r t h r i t i s ; - define common symptoms of a r t h r i t i s ; - understand the term " a r t h r i t i s " r e f e r s to m u l t i p l e disorders a f f e c t i n g the musculoskeletal system, and i d e n t i f y common forms a f f e c t i n g older adults; - be able to e x p l a i n why people experience pain due to RA and OA; - recognize some of the diagnostic techniques used f o r a r t h r i t i s . To t r a i n nursing a s s i s t a n t s t o : - recognize and report pain symptoms to supervisor (RN/LPN); - understand the r o l e of a r t h r i t i s medications; - u t i l i z e e x e r c i s e s designed to help a r t h r i t i s p a t i e n t s maintain J o i n t m o b i l i t y and i n t e g r i t y ; - u t i l i z e t r a n s f e r and p o s i t i o n i n g techniques appropriate to the a r t h r i t i s p a t i e n t . To i n s t r u c t nursing a s s i s t a n t s about: - the use of hot and c o l d treatment modalities as a method f o r improving j o i n t function and reducing pain; j o i n t p r o t e c t i o n p r i n c i p l e s ; - the use of appropriate s e l f - h e l p aides to increase independence; simple r e l a x a t i o n techniques; - some of the common problems faced by a r t h r i t i s p atients i n maintaining appropriate d i e t ; - p o t e n t i a l b e n e f i t s of s u r g i c a l i nterventions; - safe post-operative nursing care procedures f o r patients f o l l o w i n g hip replacement surgery; - how to recognize quack treatments; - a r t h r i t i s resources a v a i l a b l e i n Ohio and n a t i o n a l l y . T E A C H I N G O U T L I N E SESSION I: ARTHRITIS - GENERAL INrORMATION 2 HOURS WITH ONE 10 MINUTE BREAK PRE-SESSION ACTIVITIES: Request participants to sign registration sheet, f i l l out name tags, and complete pre-test. Each participant will receive a Course Outline and a Workbook. BEHAVIORAL OBJECTIVES CONTENT TEACHING METHOD RESOURCES AND REFERENCES EVALUATION METHOD Upon completion of this session, participants will be able to: 1. Define the meaning of the term "arthritis." why It Is Important to learn about It, and Identify one way In which limited movement can Interfere with a person's ability to maintain Independence (perform dally activities) o Why study arthritis? o Why arthritis causes pain and reasons why It Is Important to share this Information with others to reduce anxiety. o Oeflnltton of "arthritis." o How common It Is ft who does it affect in the nursing home? Ways in which arthritis interferes with dally activities, such as bathing, grooming, eating, and movement. Lecture Brainstorm Arthritis - A Compre-hensive Guide. Fries, James, M.D. Ch. 1 "Defeating Arthritis," pp. 3-7 Prevalence data for Ohio and nationally. Sources: Arthritis Program, Ohio Dept. of Health; Arthritis Foundation, National Office. Solicited examples from participants. Observation of group partici-pation Post-Test Question / 1 2. Recognize major parts of a normal joint. Brief overview of Joint anatomy. Olfferent Joint functions. Major Joint parts. Poster Demonstration A r t h r i t i s - A Comprehensive Quids. Fries, James, M.D., p. 10 Poster depicting major Joint parts Workbook: "Joints" SESSION I (Continued): ARTHRITIS - TREATMENT AND CARE BEHAVIORAL TEACHING RESOURCES AND EVALUATION OBJECTIVES CONTENT METHOD REFERENCES METHOD 3. Recognize and l i s t a) b) c) at least three (3) symptoms of a r t h r i t i s : at least three (3) Joints commonly In-volved: three (3) types a f f e c t i n g older adults. Overview of a r t h r i t i s symptoms and warning signs. Types of a r t h r i t i s : What a r t h r i t i s symptoms look l i k e ) a. 100* types b. Forms most commonly a f f e c t i n g older adults: O s t e o a r t h r i t i s Rheumatoid A r t h r i t i s Gout c. J o i n t s commonly affected by OA & RA d. Other forms of a r t h r i t i s a f f e c t i n g older adults Lecture Display Handouts (Workbook) A r t h r i t i s Foundation "Warning Signs" Poster A r t h r i t i s Teaching S l i d e r^lJectlpn^qr_Teachers of A l i l e d Health Professionals. ATthrltlsFoundatlon, 1980. Sli d e s : Types / 10, Warning Signs /18, Joint Involvement / RA / 29. 30, 32. 35, OA / 46, 47, 48, 49. Gout / 63, 64. 65. 16, Workbook: A r t h r i t i s 1 "Some Deformities of Post Test Questions / 2, 3 & 4 Active p a r t i -c i p a t i o n by ?roup i n dentlfylng deformities portrayed In sl i d e s which match those evident i n their c l i e n t s Recognize some of the diagnostic techniques used for a r t h r i t i s . Diagnostic techniques used to determine type of a r t h r i t i s Include: o (Physical examination J Imedical h i s t o r y o Blood tests o Tissue typing t e s t s o Urine tests o Biopsies o J o i n t f l u i d t e s t s o X-rays Lecture Handout (Workbook) A r t h r i t i s - A Comprehensive Guide. F r i e s , James, M.D. C h T l , pp. 135-142 Workbook: "Tests used to Diagnose A r t h r i t i s " Observation of l e v e l of Interest demonstrated by group A p p e n d i x T h r e e  L e t t e r o f A p p r o v a l f r o m t h e  A r t h r i t i s S o c i e t y R e s e a r c h C o m m i t t e e 


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