The researchers have made numerous presentations on caregiver assessment to a variety of audiences over the years, including community organizations, decision makers, etc. Below is a list of their presentations given at professional or scholarly conferences. (click to view abstract)
Présentation lors des premières rencontres scientifiques sur l’autonomie de la CNSA, Paris (12 février, 2009)
Présentation au 17e Congrès international sur les soins palliatifs Séminaire spécial : Les aidants naturels, Montréal (25 septembre, 2008)
Présentation lors du symposium Prévention de l’abus envers les aînés et politiques publiques de maintien à domicile. Politiques et pratiques au Québec et en Catalogne, Barcelone (22 novembre, 2006)
Workshop presentation at the 11th Annual Edna Gates Conference on Dementia Care, Detroit (November 7, 2006)
Presentation to Alzheimer Society of Canada Annual Conference (November 2006)
Presentation to the 17th Provincial Conference of Alzheimer Society of Nova Scotia (October 2006)
Poster presentation to International Federation on Aging (May 30-June 2,2006)
Presentation at the International Federation on Aging, Copenhagen, Denmark (May 30-June 2, 2006)
Presentation at the 16th Provincial Conference of the Alzheimer Society of Nova Scotia (October 2005)
Presentation at the 34th Annual Canadian Association on Gerontology (October 2005)
Symposium at 18th Congress of the International Association on Gerontology (June 2005)
Presentation to the Prince Edward Island Gerontological Nurses Association (April 2005)
Poster presentation at Alzheimer Society of Canada Annual Conference (April 2005)
Presentation as part of Veteran’s Health Administration Care Coordination and Caregiver Forum, Washington, D.C. (November 16, 2004)
Poster presentation to the 2nd Old Age in a New Age Conference (May 2003)
Presentation to 2003 Joint Conference of the National Council on Aging and the American Society on Aging, Chicago (March 2003)
Workshop presentation to the 3rd International Conference on Family Care (October 2002)
Poster presentation to the 3rd International Conference on Family Care (October 2002)
Symposium at the 31st Annual Canadian Association on Gerontology (October 2002)
Paper presentation to the Canadian Evaluation Society Annual Conference (May 2002)
Poster presentation to the Valencia Forum: Researchers, Educators and Providers Contribution to the Second World Assembly on Aging (April 2002)
Présenté au GRASP (19 octobre, 2001)
Presentation at XVIIth Congress of the International Association of Gerontology, Vancouver, (July 1-6, 2001)
Presentation at 5th International Care/Case Management Conference, Vancouver (June 28-July 1, 2001)
Poster presentation at International Association on Gerontology (July 2001)
Presentationas part of Health Transition Fund Workshop, Moncton (June 18-19, 2001)
Paper presentation at Alzheimer Society Canada Annual Conference (April 2001)
Paper presentation at Gerontology Society of America (November 2001)
Symposium at 29th Annual Canadian Association on Gerontology (October 2000)
Presentation at the Canadian Homecare Association 10th Annual Conference, Calgary (December 4, 2000).
Présentation lors des premières rencontres scientifiques sur l’autonomie de la CNSA, Paris (12 février, 2009)
Évaluer pour accompagner.
Nancy Guberman
Cette intervention s’articule autour de trois axes : la possibilité et la nécessité d’aider les proches aidants; les rapports entre les proches aidants et les professionnels; les moyens d’améliorer ces rapports. Nous conclurons en expliquant comment un outil comme l’AIDE-Proches peut permettre de faire émerger un partenariat, car faire une évaluation avec les proches favorise la prise en compte de leur perception de leur situation. En donnant la parole aux proches à travers une évaluation psycho-sociale globale et compréhensive, les professionnels les perçoivent moins comme des subalternes mais comme des individus à part entière, ayant leurs propres réalités et besoins. Cette nouvelle perspective peut ouvrir la porte à une coproduction négociée de l’aide et les soins.
Présentation au 17e Congrès international sur les soins palliatifs Séminaire spécial : Les aidants naturels, Montréal (25 septembre, 2008)
Les besoins des proches aidants de personnes en fin de vie: la reconnaissance en tant que client »
Nancy Guberman
abstract not available
Présentation lors du symposium Prévention de l’abus envers les aînés et politiques publiques de maintien à domicile. Politiques et pratiques au Québec et en Catalogne, Barcelone (22 novembre, 2006)
Les prochs aidants: des outils d’évaluation pour comprendre leur situation.
Nancy Guberman
abstract not available
Workshop presentation at the 11th Annual Edna Gates Conference on Dementia Care, Detroit (November 7, 2006)
“Things they told you that would never normally come up just with your client assessment” : Benefits and Challenges of Assessing Caregivers”
Nancy Guberman
This workshop will help participantsidentify the various elements to be taken into consideration when evaluating the needs of caregivers; understand the implications of the major intervention approaches with caregivers ; reflect on the benefits to caregivers, practitioners and practice of caregiver assessment; discuss the challenges to implementing caregiver assessment in their daily practice.
Presentation to the Alzheimer Society of Canada Annual Conference, Toronto (November 2006)
Caregiver Assessment – A shortened Tool to facilitate implementation into practice
Lucy Barylak, Nancy Guberman, Janice Keefe and Pamela Fancey
The CARE Tool, a psycho-social assessment tool for practitioners, was originally developed in 2001. The need for a caregiver assessment tool emerged from the recognition of caregivers’ significant contribution in the care of persons with long-term health conditions including a dementia and the increased awareness of their need for support. At the same time, an analysis of caregivers’ lack of formal status within the health care system indicated the need for specific tools aimed at them. Since its development, various health and social service agencies throughout Canada and the United States have piloted or implemented the Tool, and more research has been conducted on its efficacy. One study included an analysis of the Tool’s performance with caregivers of persons with Alzheimer’s Disease and results suggest it works well with this population.
Despite positive feedback, a noted barrier to the Tool’s implementation was its length, particularly in view of the heavy workloads that practitioners are carrying and the current lack of priority given to interventions with caregivers. To advance the work of implementing caregiver assessment into practice, this presentation will introduce a shortened version of the CARE Tool. The shortened version was developed with feedback from caregivers, home care personnel and other stakeholders and pre-tested for clarity, comprehensiveness and length. Similar to the original version, the shortened version addresses the multi-dimensional aspects of caregiving but its approach is more user-friendly.
The importance of caregiver assessment is recognized in Canada and elsewhere, but few countries if any have implemented a single assessment tool. There remain a number of issues regarding implementing caregiver assessment such as recognizing caregivers as clients, training/sensitizing and reallocation or reorganization of current workloads. However, the shortened CARE Tool in tandem with strong leadership may now be the catalyst through which Canada may develop avant-gardist practices in this area.
Presentation to the 17th Provincial Conference of Alzheimer Society of Nova Scotia, Dartmouth, Nova Scotia (October 2006)
Caregivers at Risk: A Screening Tool
Janice Keefe and Pamela Fancey, Mount Saint Vincent University
Session Objectives:
1. To introduce and provide rationale for the construction and content of the Caregiver Risk Tool (CRS), a brief instrument, used to identify/screen priority cases in need of an assessment or other intervention.
2. To highlight findings related to risk amongst different caregiver situations, including those with Alzheimer’s Disease and related disorders.
3. To link the CRS to the CARE assessment tool.
4. To dialogue with participants about challenges related to caregivers being recognized in home care system and the role of tools such CRS and CARE.
Poster presentation to International Federation on Aging, Copenhagen, Denmark (May 30-June 2, 2006)
Validation of the Caregiver Risk Screen: A screening tool developed to prioritize intervention for caregivers.
Nancy Guberman (University of Quebec at Montreal), Lucy Barylak (CSSS Cavendish), Pamela Fancey and Janice Keefe (Mount Saint Vincent University)
The Caregiver Risk Screen (CRS) is a tool to assist home care professionals screen high-risk family caregivers who may benefit from early intervention. Early detection of risk may prevent crises or emergency situations such as breakdown of the caregiving situation, family breakdown, abuse or neglect. In contrast to existing tools for caregivers, the CRS is aimed at a broad range of caregivers and situations and is not limited to a particular care receiver population or a single measure of burden or depression. The instrument contains 12 items which identify whether the caregiver’s physical and/or mental well-being is in jeopardy or the care being provided is deteriorating (e.g. physical health, depression, social support, family dynamics, behaviour changes).
This presentation provides the results of ongoing validation analysis of the CRS. Based on a sample of more than 350 caregivers to elderly home care clients, the CRS demonstrates favourable internal consistency and correlates with established measures such as Caregiver Burden Scale and Caregiver Well Being Scale. Further, preliminary analysis of the CRS in relation to results of the C.A.R.E. Tool, a psycho-social assessment tool for caregivers, suggests the CRS has the potential to predict situations in need of an early intervention. These validation results, in tandem with previous results, support the merit of the CRS as a valuable tool to assist home care practitioners identify high-risk situations and prioritize these situations for assessment and intervention.
Research support from the U.S. Alzheimer’s Association is gratefully acknowledged.
Presentation at the International Federation on Aging, Copenhagen, Denmark (May 30-June 2, 2006)
Assessing caregivers: Bringing needs to light.
Nancy Guberman
Informal caregivers are central to the care of people suffering from illness or loss of autonomy. Yet despite their invaluable contributions, caregivers rarely have formal status within the health and social service system. The CARE Tools, validated screening and assessment instruments for caregivers, offer a way of intervening with caregivers to assess their situation and their needs. The Tools were developed by a group of Canadian researchers in 2000, with funding from Health Canada, and their validation took place in health care establishments across the country. The impact of the Tools on both practitioners and caregivers has been extremely encouraging, and they are now being implemented in a variety of agencies, nationally and internationally. They are currently being tested further with caregivers of people with Alzheimer’s or related dementia, with funding from the American Alzheimer’s Association. This presentation will discuss these findings, as well as the impact of the Tools on practice with caregivers, and on health and social service policy.
Presentation at the 16th Provincial Conference of the Alzheimer Society of Nova Scotia, Sydney, Nova Scotia (October 2005)
Promoting C.A.R.E.: Caregivers’ Aspirations, Realities and Expectations
Janice Keefe, Mount Saint Vincent University
Session Objectives:
1. To introduce and provide rationale for the C.A.R.E. tool, a caregiver assessment tool used to better understand Caregivers’ Aspirations, Realities and Expectations.
2. To review of the critical components of C.A.R.E. to assess caregivers needs.
3. To highlight findings of areas of difficulty experienced by caregivers of persons with ADRD versus those caring for persons with other illnesses or disabilities.
4. To dialogue with participants about challenges and barriers to caregiver assessment.
Presentation at the 34th Annual Canadian Association on Gerontology, Halifax, Nova Scotia, (Oct 2005)
Caregiver Assessment: Does it Change Overall Caregiver Satisfaction with Practitioners and Services?
Nancy Guberman, (University of Quebec at Montreal, Montreal, Canada), Pamela Fancey, M.A. and Janice Keefe, Ph.D. (Mount Saint Vincent University, Halifax, Canada) & Lucy Barylak (CSSS Cavendish/University Institute of Social Gerontology of Quebec, Montreal, Canada).
Family and friend caregivers are an essential part of the care system, yet in most Canadian provinces their role in relation to formal services is ambiguous. The C.A.R.E. Tool is a multi-dimensional psychosocial assessment designed for use by home care practitioners to assess caregivers’ needs which may lead to support and/or services for caregivers.
As part of a three-year study funded by the US Alzheimer’s Association, more than 400 caregivers of persons with and without Alzheimer’s Disease are expected to participate in two telephone interviews four months apart. Approximately half are being assessed by a home care practitioner using the C.A.R.E. Tool while the other half will receive the normal interventions offered by the agency.
This presentation examines post-test interviews of approximately 250 caregivers, specifically caregivers’ perception of change in knowledge, involvement, awareness and services between pre and post test. Preliminary results suggest that caregiver assessment does make a difference. Caregivers report increased involvement in decisions regarding services provided to the care recipient and greater recognition as a caregiver. Analysis of “change” results by key variables such as presence and stage of dementia and length of caregiving may help refine our understanding of under what circumstances the C.A.R.E. Tool works best.
Symposium at 18th Congress of the International Association on Gerontology, Rio de Janeiro, Brazil (June 2005)
Caregiver Assessment : What’s New and Where Do We Go From Here?
N. Guberman, Département de Travail Social,Université du Québec à Montréal; J.Keefe and P.Fancey, Department of Family Studies and Gerontology, Mount Saint Vincent University; & L. Barylak, CLSC René-Cassin.
In countries of the Western world, dominant practices of institutionalization have given way to a clear volition to maintain and assure services in the community to various populations who are dependent on others for the accomplishment of their daily activities. However, all studies on who is offering support and services to dependent persons in the community have amply demonstrated that community care is mainly family care and that family care can too often be summed up as care by women in the family. Families are in fact the most important source of help to dependent persons (Chappell et al, 1986), and 70-80% of family caregivers are women (Finch & Groves, 1983; Stone, Cafferta & Sangl, 1987). Research has also shown that this transfer of responsibility from the public domain to the private realm of the family has not been accompanied by a real plan of service allocation and support to family caregivers. The negative impact of this situation on family caregivers in terms of their physical and mental health, their finances, their workplace participation and their family and social responsibilities have also been amply documented (Brody, 1990; Cantor, 1983; Guberman et al, 1993; Keefe & Fancey, 1997, 1998;). In the past few years, pressures on family members to become caregivers have only increased as health systems move away from hospitalization to day surgery and home convalescence.
It is within this context, that caregivers are increasingly being identified by health and social service practitioners and case managers as having specific, often unmet, needs for support, respite, information and advocacy, which should translate into interventions aimed specifically at them
In North America and Great Britain, in particular, there is an increasing awareness of the need to better understand the situation of caregivers so as to better meet their needs and also that of the person requiring care. To that end, efforts have gone into sensitizing policy makers and practitioners to the need to ensure caregiver assessment and to the development of specific assessment tools.
This symposium brings together experts in the field to look at the current situation with regard to caregiver assessment and the challenges which are before us in trying to ensure that caregivers are considered as persons in their own right who must have access to services and consideration.
1. Rethinking the Activities of Daily Living from a Family Caregiver Perspective- Steven Albert, Columbia University
In this research, we ask: If we know someone’s ADL status, what do we know about his or her caregiving needs, and what do we not know? ADL status is a good indicator of caregiving need but not always a good indicator of what caregivers do to meet these needs. For this reason, ADL disability is only a modest predictor of caregiver burden or time commitment. Current measures of “need for help in bathing,” for example, do not specify if the care recipient is cooperative or obstructive, if the caregiver must help in all or only some facets of the task, and if the activity can be scheduled regularly or not. Research with caregivers to people with traumatic brain injury and stroke suggests the need for a more complex measure of caregiving “work” that takes into account the ways caregivers provide help and create environments that support care recipients.
2. Caregiver Assessment: Caregivers’ Views of Whether it Makes a Difference
Pamela Fancey, Janice Keefe, Nancy Guberman & Lucy Barylak
Mount Saint Vincent University
The way caregivers are perceived by practitioners and decision makers has important implications for their place in service delivery. In most Canadian provinces, caregivers’ role in relation to formal services is non existent or ambiguous. Mostly, they are viewed as a resource or potential supply of labor. In a few instances they may be considered a partner in care and less so as a client in their own right. While the impact of assessment has been documented from the practitioner’s perspective, little is known about whether assessing caregivers makes a difference from the caregiver’s perspective. The C.A.R.E. Tool is a multi-dimensional psychosocial assessment designed for used by home care practitioners. Through its comprehensive approach, it is a vehicle through which caregivers can give voice to their situations and practitioners perceptions altered.
This presentation examines interview data for approximately 175 caregivers who participated in both a pre- and post-test four months apart. Respondents represent a range of caregiving situations and relations, half of whom completed the C.A.R.E. assessment shortly after the pre test was administered. One component of the post-test interview included questions on change in knowledge, involvement, awareness and services between pre and post test.
Preliminary results of the post test suggest that caregiver assessment does make a difference. In particular, caregivers report increased involvement in decisions regarding services provided to his/her care recipient. This finding suggests that the assessment process provides an opportunity for caregivers to be viewed by practitioners as a “partner” in care. This is a 3-year study funded by the American Alzheimer’s Association.
3. Carer (Caregiver) Assessment: Lessons from the UK
Mike Nolan, Jayne Brown and Kevin McKee, University of Sheffield
An assessment of need for eligible family carers has been a statutory right in the UK for a decade, and within the last year additional legislation has been introduced to provide yet further rights for carers. Despite this a major review of carer assessments undertaken by the UK Audit Commission has indicated that, whilst progress has been made much remains to be done if carers are to receive maximum benefit from their statutory rights. Furthermore, even when carers can access services, these are often rejected due to perceived poor quality and lack of flexibility. If progress is to be made both the quality of the assessment process and subsequent service need to be improved.
This paper will draw on data from a large-scale interview survey of 1000 carers polled from the whole of the UK. Particular attention will be given to what carers perceive as essential elements of quality services. It will be argued that unless such criteria are addressed then both assessment models and service responses are likely to remain inadequate. Implications for assessment practice will be discussed and suggestions made as to how quality criteria can be incorporated into the assessment process.
4. The challenges of implementing caregiver assessment
Nancy Guberman, Université du Québec à Montréal
Despite growing awareness of the need to assess caregivers, many policy makers, managers and front-line practitioners face this idea with much trepidation. Caregiver assessment is often viewed mainly as more forms to fill out and more clients to service in a context of scarce financial, human and service resources. It is evident that a major challenge for implementation is buy-in from all concerned stakeholders. This buy-in must be predicated on the clarification of caregivers’ status in policy and programs and a clarification of the role and objectives of assessing them. Based on a survey of experiences of assessment implementation in North America and the U.K., this presentation will address a number of challenges to the implementation of caregiver assessment and various ways they have or can be met.
Presentation to the Prince Edward Island Gerontological Nurses Association, Cornwall, Prince Edward Island (April 2005)
Many Faces of a Family Caregiver: Recognizing their Caregiving Aspirations, Realities and Expectations – The C.A.R.E. Tool.
Janice Keefe, Mount Saint Vincent University
The vast majority of dependent Canadians living in the community rely on family and friend caregivers for assistance. Studies clearly indicate that that caregivers have their own support needs and should be assessed in their own right, separately from the care receiver, to implement specific interventions to meet the caregiver’s needs.
This presentation will address trends and issues facing caregivers today, the implications of these trends and one strategy, caregiver assessment, that may be used to better understand caregivers’ aspirations realities and expectations. Focusing on the C.A.R.E. Tool, an assessment tool for family caregivers, this presentation will demonstrate that the C.A.R. E. Tool validates caregivers’ experiences, pinpoints their support needs and identifies appropriate interventions to enhance their well-being.
Poster presentation at Alzheimer Society of Canada Annual Conference, Regina, Saskatchewan (April 2005)
Assessment makes a difference: Recognizing the distinct issues affecting caregivers of the cognitively impaired.
Keefe, J., Fancey, P., Guberman, N. & Barylak, L. Mount Saint Vincent University, Halifax, NS.
Family caregivers are an integral component of the care of persons with Alzheimer Disease and Related Disorders (ADRD). The C.A.R.E Tool, a multi-dimensional assessment, was one outcome of a research project, funded by Health Canada (1999-2001) designed to evaluate the needs of family caregivers. Building on this work, this poster describes an evaluation framework, funded by the Alzheimer’s Association, USA (2003-2006), that examines the impact of the C.A.R.E. Tool on caregivers of persons with ADRD. The content of the C.A.R.E. tool is outlined and key components of the research presented.
One objective of the study is to assess the change in risk to the well-being of family caregivers of persons with ADRD. To understand the impact of the C.A.R.E. Tool a quasi-experimental design with quantitative and qualitative methods is used. Caregivers are recruited through publicly funded home care programs in three Canadian provinces, which serve as the test sites for this research. Interviews with caregivers, a caregiver contact log recorded by home care practitioners, focus groups with practitioners and interviews with agency supervisors is employed to gather data regarding the usefulness of the C.A.R.E. Tool and to understand its impact on practice within service organizations. Potential outcomes include an increased awareness and sensitivity to caregivers’ needs in situations where ADRD is present and evidence to support the recognition of caregivers’ needs in daily home care practice
Presentation as part of Veteran’s Health Administration Care Coordination and Caregiver Forum, Washington, D.C. (November 16, 2004)
Development and Validation of the C.A.R.E Tool (caregivers assessment)
Guberman, N. et al.
abstract not available
Poster presentation to the 2nd Old Age in a New Age Conference, Saint John, New Brunswick (May 1-3, 2003)
The Caregiver Assessment Tool
Fancey P., Keefe, J., Guberman, N., Nahmiash, D., & Barylak, L. Mount Saint Vincent University, Halifax, Nova Scotia.
Family caregivers are a central component in the care of disabled and chronically ill persons in Canada. Despite the fact that they have needs and interests which are often different from those of the care receiver, their relationship to formalized services are often ambiguous and their needs are rarely assessed. A Caregiver Assessment Tool was one outcome of a research project, funded by Health Canada and designed to evaluate the needs of family caregivers. The project involved extensive consultation in developing the tool, in its implementation and its evaluation. The Assessment Tool consists of 10 dimensions: caring work; relationship with formal agencies; housing; juggling other responsibilities; financial costs of caregiving; family dynamics; physical and emotional health; service needs; and crisis and future planning.Home care practitioners at seven public home care agency sites in Quebec and Nova Scotia and 168 caregivers participated in the formal test of the assessment tool in English and French. Home care practitioners were chosen because the assessment is intended for implementation at the community level, and this format most closely ressembles “real” practice. Caregivers were chosen from home care caseloads. Both quantitative and qualitative methods were used in the evaluation. The results of the inter-rater reliability, internal consistency tests and focus groups suggest that this Tool is a valid and reliable instrument to understand caregiver’s needs and situations. The Tool was found to increase practitioner’s understanding and awareness of what it means to be a caregiver and occasionally changed their practice with caregivers. Evaluation results indicate that the Tool gave caregivers recognition and validated their concerns and everyday efforts. We recommend that the Caregiver Assessment Tool be considered as a way of taking into account caregivers’ reality and conditions and to better identify priority needs and services to support them.
Presentation to 2003 Joint Conference of the National Council on Aging and the American Society on Aging, Chicago (March 2003)
Assessing caregivers: the “whys” and the “how tos”
Guberman, N. et al.
abstract not available
Workshop presentation to the 3rd International Conference on Family Care, Washington, D.C. (Oct 2002)
Tools to Assess Caregivers: Things They Told You That Would Never Normally Come Up With Your Client Assessment
Lucy Barylak, MSW, Coordinator, Caregiver Support Centre, CLSC ReneCassin/Institute of Social Gerontology of Quebec, Montreal, Canada) & Nancy Guberman, Professor, Ecole de Travial Social, Universite du Quebec a Montreal, Montreal, QC, Canada.
This session presents caregiver assessment tools developed and validated in Canada and evaluate their applicability to participants’ work settings. Presenters will discuss reasons that caregivers are not currently assessed and impacts of this situation on caregivers and on intervention, and look at obstacles to implementation of assessments and strategies for overcoming them.
Poster presentation to the 3rd International Conference on Family Care, Washington, D.C. (Oct 2002)
A Canadian Caregiver Assessment Tool
Janice Keefe, Ph.D. & Pamela Fancey M.A. (Mount Saint Vincent University, Halifax, Canada), Nancy Guberman, (University of Quebec at Montreal, Montreal, Canada), Daphne Nahmiash (University of Laval, Quebec City, Canada) & Lucy Barylak (CLSC ReneCassin/University Institute of Social Gerontology of Quebec, Montreal, Canada).
Family caregivers are a central component in the care of disabled and chronically ill persons in Canada. Despite the fact that they have needs and interests which are often different from those of the care receiver, their relationship to formalized services are often ambiguous and their needs are rarely assessed. In Canada, research funded by the National Health Transition Fund, has developed a comprehensive caregiver assessment tool to be used by home care professionals to systematically identify and evaluate caregivers needs with a range of populations.The assessment tool consists of 10 dimensions: caring work; relationship with formal agencies; housing; juggling other responsibilities; financial costs of caregiving; family dynamics; physical and emotional health; service needs; and crisis and future planning. In Spring 2000, 168 caregivers were assessed using the new tool by home care assessors in eight agencies across two Provinces. The objectives of this poster presentation are threefold: 1) To learn about the way in which practitioners and researchers in Canada worked together to develop a caregiver assessment tool. 2) To obtain specific information about the content of the assessment tool and the way in which the tool was evaluated. 3) To learn how the tool may be used to assess caregiver’s needs and identify a plan of action/intervention. To outline the components of the assessment tool and present the way in which caregiver=s need can be assessed. The findings of our research are discussed in terms of the utility of the tool to identify priority needs and services for family members caring for persons in rural and urban settings.
Symposium at 31st Annual Canadian Association on Gerontology, Montreal, Quebec (Oct 2002)
The place of caregivers in single entry assessment tools
Nancy Guberman, Janice Keefe, John Hirdes, Carole Naud, Pamela Fancey, École de Travail Social, UQAM, C.P. 8888 Succ. Centreville, Montréal, QC H3C 3P8 (guberman.nancy@uqam.ca), Tel: (514) 987-3000 ext 4520, Fax: (514) 987-8795
Most, if not all, provinces in Canada are in the process or have implementing single-entry assessment tools for frail elderly living in the community. These tools are specifically aimed at evaluating the level of functional autonomy of the elderly and the extent of their informal support, to determine their home care or placement needs. Although, there is some room in these evaluations to note aspects of the person’s social environment, there is little consideration for taking into account the reality and situation of family members or others who are providing the “informal” care. And when assessors do note caregivers’ situations, they are most often not able to go beyond a summary analysis of caregiver burden. At present, within provincial home care systems, there is a lack of standardized evaluation tools that enable practitioners to record the context of caregiving situations and identify caregivers’ specific service needs. This symposium is aimed at contributing to the debate around the inclusion of caregiver issues in home care assessments and the challenges of articulating a caregiver assessment tool with the major assessment tools of the care receiver, the MDS-home care and the multi-clientèle. In particular, it will examine the potentials and limits of a separate and comprehensive caregiver assessment tool such as that developed and validated by Guberman et. al.
1. Le développement d’un outil provincial pour évaluer des besoins des personnes ayant des incapacités: la place des proches
Carole Naud (Ministère de la santé et des services sociaux du Québec)
Au moment où une grande majorité des personnes ayant des incapacités sont maintenues dans la communauté, il importe de consolider et uniformiser un outil d’évaluation de leur situation permettant de répondre de façon efficace et pertinente à leurs besoins. Un élément clé dans la vie de la majorité de ces personnes est la présence de proches qui offrent une quantité importante d’aide et de soutien. Les recherches ayant démontré que ce travail de soutien peut avoir des conséquences néfastes sur les proches, il devient essentiel d’intégrer une évaluation spécifique de leur situation à la grille d’évaluation de la personne en besoin. Le Québec travaille à la mise en place d’une grille d’évaluation unique pour tous ses programmes des services intégrés pour les personnes âgées en perte d’autonomie et les personnes présentant un profil gériatrique. La grille retenue est l’Outil d’Évaluation Multiclientèle qui est le tronc commun auquel des outils d’évaluation complémentaires se grefferont . C’est dans ce contexte que le Comité scientifique ayant pour mandat de faire évoluer l’Outil, examine les modalités de l’intégration d’un outil complémentaire pouvant évaluer la situation et les besoins des proches. Les modalités proposées par le Comité aviseur sur l’adoption d’un outil prévoient des marqueurs dans l’Outil d’Évaluation Multiclientèle qui ouviront au besoin sur des outils complémentaires ciblés. Nous présenterons nos réflexions à ce sujet .
2. Assessing caregiving arrangements using the MDS-Home Care
John Hirdies (University of Waterloo & Homewood Research Institute)
The MDS-Home Care (MDS-HC) is a comprehensive assessment instrument designed to assess the strengths, preferences and needs of the frail elderly and persons with disabilities. The assessment covers a broad range of social, psychological, environmental and medical factors that can influence the clients ability to function independently. This instrument is being implemented in four Canadian provinces and one territory, and is now used in home care by one-fifth of US states. Included in the MDS-Home Care are a series of items dealing with caregiving arrangements including the caregiver’s relationship with the client, living arrangements, type and amount of support provided, capacity to increase support and signs of caregiver strain. This paper will examine MDS-HC data for about 13,000 home care clients from Ontario, Nova Scotia and Manitoba to illustrate the use of the instrument to assess the needs of clients and their caregivers. In particular, the relationship between signs of caregiver strain, client characteristics, access to services and eligibility systems will be discussed. Advantages and limits of assessing caregivers through the MDS-HC will be examined.
3. Caregiver Assessment: Justifying Caregivers Role and Needs
Janice Keefe, PhD and Pamela Fancey MA (Mount Saint Vincent University), Nancy Guberman, (University of Quebec at Montreal) Daphne Nahmiash, & Lucy Barylak, (CLSC René Cassin).
A Caregiver Assessment Tool was developed to evaluate the specific needs of family caregivers as partners in the formal care system. Caregivers and home care assessors were involved in the development, testing and Evaluation of the Tool (40 assessors and 168 caregivers across seven research sites in Nova Scotia and Quebec). Caregivers were interviewed twice by a different assessor within seven working days. Assessors synopsis data were analyzed to determine the inter-rater reliability for 15 assessment areas and 18 key areas of concern, as well as assessors consistency between the assessment areas and key areas of concern. Statistical tests indicate significant relationships for12 of 15 assessment areas, and agreement on key areas of concerns ranged from 65% to 99% with several Kappa reaching the moderate level. Statistically significant relationships exist between assessors ratings of difficulty and the identified service areas. Further, comments from assessors and caregivers support the comprehensiveness and validity of the Tool. Results suggest the Caregiver Assessment Tool is a valid and reliable instrument to understand caregivers needs, from which substantiated service plans may be developed. This work confirms that addressing caregivers needs accurately and reliably is important in the development of quality home and community care. This research was funded by Health Canada.
4. Benefits and Limitations of a Comprehensive Specific Caregiver Assessment
Nancy Guberman, (University of Quebec at Montreal), Janice Keefe & Pamela Fancey M.A (Mount Saint Vincent University), Daphne Nahmiash & Lucy Barylak, (CLSC Rene Cassin).
Some authors feel that standardized assessments must be part of a comprehensive assessment and not the only method of assessment (Dewing & Pritchard, 2000; Ford & McCormack, 1999). Ford & McCormack (2000) go further in advancing that the adoption of standardized tools contradicts an espoused client-centered orientation, as they do not take into account the individuality of the person, their subjective views with regard to their needs, cultural diversity, values and beliefs and do not permit flexible and individualized responses. They propose a standardized approach to assessment that invites assessors to look at specified domains but leaves flexibility as to the order and thoroughness of assessment of each domain. The Caregiver Assessment Tool attempts to respond to the criticisms raised by Ford & McCormack. The tool covers ten areas which the literature, key informants, caregivers and practitioners identify as crucial for caregivers. Questions are formulated so as to elicit responses from the caregivers perspective and to allow them the possibility to explain under-lying rationales for difficulties or needs. Because this type of assessment opens the door to a subjective appreciation of the situation which may be influenced by the immediate environmental context, it is suggested that it be an on-going process over a period of two or three contacts. How does such a tool fit into the current care recipient assessment models? How does one move from assessing the frail persons needs to assessing the caregivers situation? Which caregivers should be assessed? This presentation will attempt to respond to these questions.
Paper presentation to the Canadian Evaluation Society Annual Conference, Halifax, Nova Scotia (May 2002)
Evaluating the Utility of an Assessment Tool for Family Caregivers
Janice Keefe, Pamela Fancey, Nancy Guberman, Daphne Nahmiash, & Lucy Barylak; Dept of Family Studies and Gerontology, Mount Saint Vincent University, 166 Bedford Highway, Halifax, Nova Scotia, B3M 2J6.
Family caregivers are an integral and essential component in the care of elderly persons. A Caregiver Assessment Tool was one outcome of a research project, funded by Health Canada and designed to evaluate the needs of family caregivers. One of the key lessons learned from this project was the importance of involving practitioners and policymakers at all stages of the project, including the tools development, its implementation and its evaluation. Seven public home care agency sites in Quebec and Nova Scotia and 168 caregivers participated in the formal test of the assessment tool in English and French. Both quantitative and qualitative methods were used in this evaluation. The results of the inter-rater reliability, internal consistency tests and focus groups suggest that this comprehensive tool is a valid and reliable instrument to understand caregivers needs and situations. The challenges and rewards of involving multiple partners in the evaluation will be discussed.
Poster presentation at the Valencia Forum: Researchers, Educators and Providers Contribution to the Second World Assembly on Ageing, Valencia, Spain (April 1-4, 2002)
A Canadian Caregiver Assessment Tool
Fancey P., Keefe, J., Guberman, N., Nahmiash, D., & Barylak, L. Mount Saint Vincent University , Halifax, NS, Canada.
Family caregivers are an integral and essential component on the care of elderly persons in Canada. A Caregiver Assessment Tool was one outcome of a research project, funded by Health Canada and designed to evaluate the needs of family caregivers. The project involved extensive consultation in developing the tool, in its implementation and its evaluation. Seven public home care agency sites in Quebec and Nova Scotia and 168 caregivers participated in the formal test of the assessment tool in English and French. Both quantitative and qualitative methods were used in this evaluation. The results of the inter-rater reliability, internal consistency tests and focus groups suggest that this comprehensive tool is a valid and reliable instrument to understand caregiver’s needs and situations. The geography of Canada, its cultural diversity and differences in service accessibility and delivery all contribute to the need for tools which can be applied to both the French and English speaking populations. Evaluation results indicated that the tool gave caregivers recognition and validated their concerns and everyday efforts. They recommend that the tool be considered as a way of taking into account caregivers reality and the conditions that situate them as essential partners within the formal care system.
Présenté au GRASP Groupe de recherche sur les aspects sociaux de la santé), Université de Montréal, (19 octobre, 2001)
L’évaluation des besoins: un outil pour sortir les aidantes “naturelles” de l’ombre
Nancy Guberman
Les aidantes dites naturelles sont au centre de la prise en charge des personnes malades ou ayant des incapacités. Malgré leur contribution inestimable, elles n’ont pas de statut formel dans leurs rapports avec le système de santé et des services sociaux. À ce moment, il n’existe pas de modèle d’intervention validé ni d’outils appropriés pour évaluer leurs situations et leurs besoins. Cette recherche a développé et a validé des outils de dépistage et d’évaluation auprès des aidantes. La validation a eu lieu dans des établissements offrant les services à domicile et a été menée par des intervenantes elles-mêmes. Nous avons été étonné de constater l’impact de cette expérimentation sur les practiciennes et pouvons affirmer que les outils modifient la vision et la pratique des ces dernières en ce qui concerne les aidantes.
Presentation at XVIIth Congress of the International Association of Gerontology, Vancouver, (July 1-6, 2001)
Implications of the Transfer of Specialized Care to Patients and Caregivers After Hospital Discharge in Quebec
Guberman N. et al.
abstract not available
Presentation at 5th International Care/Case Management Conference, Vancouver (June 28-July 1, 2001)
Challenges of implementing caregiver assessments into case management practice
Nancy Guberman, Janice Keefe, Pamela Fancey, Daphne Nahmiash & Lucy Barylak
Despite growing awareness of the need to assess caregivers, many policy makers, managers and front-line practitioners face this idea with much trepidation. Caregiver assessment is often viewed as more forms to fill out and more clients to service in a context of scarce financial, human and service resources. It is evident that a major challenge for implementation is buy-in from all concerned stakeholders. This buy-in must be predicated on the clarification of caregivers’ status in policy and programs and a clarification of the role and objectives of assessing them. Based on a survey of experiences of assessment implementation in North America and the U.K., this presentation will address a number of challenges to the implementation of caregiver assessment and various ways they have or can be met. These challenges include: defining the status of caregivers and their right to services; agreement around the purpose of assessing caregivers and who should be assessed; training personnel; rethinking services to elder persons with disabilities to include services for caregivers.
Poster presentation at International Association on Gerontology, Vancouver (July 2001)
Impact of context on the inter-rater reliability of a caregiver assessment tool
Janice Keefe, Ph.D., and Pamela Fancey, M.A. (Mount Saint Vincent University, Halifax, Canada), Nancy Guberman, (University of Quebec at Montreal, Montreal, Canada) Daphne Nahmiash, (University of Laval, Quebec City, Canada) & Lucy Barylak (CLSC René Cassin/University Institute of Social Gerontology of Quebec, Montreal, Canada).
Family caregivers are a central component in the care of disabled and chronically ill persons in Canada. Despite the fact that they have needs and interests which are often different from those of the care receiver, their relationship to formalized services are often ambiguous and their needs are rarely assessed. In Canada, research funded by the National Health Transition Fund, has developed a comprehensive caregiver assessment tool to be used by home care professionals to systematically identify and evaluate caregivers’ needs with a range of populations. The assessment tool consists of 10 dimensions: caring work; relationship with formal agencies; housing; juggling other responsibilities; financial costs of caregiving; family dynamics; physical and emotional health; service needs; and crisis and future planning. In Spring 2000, 168 caregivers were assessed using the new tool by home care assessors in eight agencies and two Provinces. The goal of this poster presentation is to outline the components of the assessment tool and report on the impact that contextual variables, such as Province, rural-urban and language, have on the inter-rater reliability of the assessment tool. Findings suggest that inter-rater reliability, as measured by Kappa, is less affected by Provincial location or language of the assessment than by whether the caregiver is in a rural or urban setting but even here the differences are minimal. These findings are discussed in terms of the utility of tool to identify priority needs and services for family members caring for persons in different provinces, in different languages and in both rural and urban settings.
Presentation as part of Health Transition Fund Workshop, Moncton (June 18-19, 2001)
Development of Screening and Assessment Tools for Family Caregivers
Guberman, N., Keefe,.J, Fancey, P., Nahmiash D., & Barylak, L.
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Paper presentation at Alzheimer Society Canada Annual Conference (April 2001)
Assessing caregivers’ needs: Similarities and differences of caregivers
Janice Keefe, Ph.D., & Pamela Fancey, M.A., Mount Saint Vincent University with Nancy Guberman, Daphne Nahmiash, & Lucy Barylak.
The particular difficulties of caring for persons with dementia have received increased attention, but despite informal caregivers being critical to policies of community care, their relationship to formalized services are often ambiguous and their needs, over and above the care recipients needs, are rarely assessed. In Canada, research funded by the National Health Transition Fund, has developed a comprehensive caregiver assessment tool to evaluate the specific needs and situations of caregivers. The assessment tool consists of 10 dimensions: caring work; relationship with formal agencies; housing; juggling other responsibilities; financial costs of caregiving; family dynamics; physical and emotional health; service needs; and crisis and future planning. In Spring 2000, 168 caregivers were assessed using the new tool by home care assessors in 8 agencies and two provinces. This presentation presents the similarities and differences of caregivers’ needs by whether or not the care recipient has a form of dementia. Preliminary findings suggest that the assessment tool is appropriate for assessing the needs of both caregiver groups and that differences occur primarily in areas which examine the relationship with the care recipient. These findings are discussed in terms of the utility of the tool to identify priority needs and services for family members caring for persons with dementia.
Paper presentation at Gerontology Society of America (Nov 2001)
“I see caregivers in a whole new light now”: Impacts on home care practitioners of testing a caregiver assessment tool
N. Guberman, J. Keefe, P. Fancey, D. Nahmiash & L. Barylak, School of Social Work, Université du Québec à Montréal, Montréal, Québec, H3C 3P8.
A multidisciplinary Canadian team developed and validated a comprehensive caregiver assessment tool. The validation phase was agency-based. The tool was administered twice to 168 caregivers by two different practitioners. Home care practitioners were chosen because the assessment is intended for implementation at the community level, and this format most closely resembles “real” practice. Caregivers were chosen from assessors’ caseloads. Based on analysis of focus groups with assessors, we can advance that the tool increases worker understanding and awareness of what it means to be a caregiver. The tool changed assessors’ attitudes, and occasionally their practice with care-givers. We would advance that the assessment tool has the potential to change the technical appropriateness of intervention by informing practitioners of elements in the context of homecare recipients which have been given little attention until now but which impact on the adequacy of interventions. The tool also led to changes in assessors’ understanding of the service and resource needs of caregivers and when these services and resources are available will lead (and did lead in some cases) to a better access to services for caregivers.
Symposium at 29th Annual Canadian Association on Gerontology, Edmonton, Alberta (Oct 2000)
Development and Validation of Screening and Assessment Tools for Family Caregivers Symposium
N. Guberman (guberman.nancy@uqam.ca), Département de Travail Social,Université du Québec à Montréal; J. Keefe (janice.keefe@msvu.ca) and P.Fancey (pamela.fancey@msvu.ca), Department of Family Studies and Gerontology, Mount Saint Vincent University, Halifax, NS, B3M 2J6, Tel: (902) 457-6466 Fax: (902) 457-6134; D. Nahmiash, (daphne.nahmiash@svs.ulaval.ca), École de Service Social, Université Laval;L. Barylak, (lbarylak@ssss.gouv.qc.ca), Institut Universitaire de Gérontologie Sociale du Québec, CLSC René-Cassin.
Family caregivers are a central component in the care of disabled and chronically ill persons in Canada. Despite the fact that they have needs that are often different from those of the care receiver, their status with regards to the formal system of services remains ambiguous. Are they clients, resources, or partners? The goal of this research is to develop and validate a screening tool and an assessment tool for family caregivers, to sensitize practitioners and policy makers to caregivers’ situations and needs and to standardize practice and rationalize service delivery. The research is funded by the Health Transition Fund, Health Canada.
The first paper gives an overview of the process which led to the conception of the project, and outlines the project’s framework. The second and third papers focus on the development, content and testing procedure of the screening tool and the assessment tool. The two tools were tested by homecare staff in 7 rural and urban sites in Quebec and Nova Scotia. The screening tool consists of 12 statements and is designed to identify situations where the caregiver’s well-being is at risk. It was tested at intake with 175 caregivers and validated with the Rankin et al. (1994) Caregiver Burden Screen. The assessment tool consists of 10 dimensions to identify caregiver needs: caring work; relationship with formal agencies; housing; juggling responsibilities; financial costs of caregiving; family dynamics; physical and emotional health; service needs; and crisis and future planning. It was tested with 175 caregivers who participated in two assessments, conducted by two different home care staff. The final paper presents issues raised in the development and implementation stages, given the complexity of family caregiving and the nature of a national project involving 3 research teams, 2 languages, 8 home care offices and more than 40 home care staff.
1. Developing a screening tool and assessment tool for informal caregivers: An overview
L. Barylak, Institut Universitaire de Gérontologie Sociale du Québec, CLSC René-Cassin, 5800 Cavendish Blvd. #200, Cote St. Luc, Québec, H4W 2T5; N. Guberman, Département de Travail Social, Université du Québec à Montréal; D. Nahmiash, École de Service Social, Université Laval; and J. Keefe and P. Fancey, Department of Family Studies and Gerontology, Mount Saint Vincent University.
Family caregivers are a central component in the continuing care of disabled and ill adults in Canada, but their status with regards to service agencies is ambiguous. Within provincial home care systems, there is a lack of standardized evaluation tools that enable practitioners to record the context of caregiving situations and identify caregivers’ service needs. A national project funded by the Health Transition Fund of Health Canada has recently developed and tested screening and assessment instruments which enable a more comprehensive and systematic method of evaluating family caregivers’ needs. This presentation will provide an overview of the processes which led to the conception of the project, the caregiver needs it was aimed at addressing, and the development of a partnership between researchers and practitioners. The development and testing phases will be outlined as well as the role of the project’s National Advisory Committee. This presentation will lay the groundwork for reviewing the issues involved in developing and validating a method of evaluation that is both multi-dimensional and applicable to a wide range of caregiving situations.
2. Development and presentation of a brief screening tool for caregivers of home care clients
D.Nahmiash, Ph.D. École de Service Social, Université Laval, Québec, G1K 7P4, and L. Vézina, M.Ps., École depsychologie, Université Laval.
This presentation will discuss the development of a tool to screen caregivers of home care clients who are at risk in terms of their physical and mental well-being. This tool will help intake workers target which caregivers need intervention and immediate support. The development of the screening tool was based on an extensive review of validated screening instruments in the scientific literature, and the results of focus groups with caregivers and with professionals. The first part of the screening tool contains basic sociodemographic information and descriptive information about the caregiving context. The second part contains twelve statements related to caregiving, and asks the caregiver to rate each statement according to their agreement or disagreement on a four point scale. The instrument was pretested in both English and French in the Montreal and Quebec regions. It was then tested by home care staff with 175 caregivers in 7 rural and urban sites in Quebec and Nova Scotia, and validated using the Rankin, Haut, Keefover, & Franzen’s (1994) scale, the Caregiver Burden Screen.
3. Developing a reliable and validated assessment tool for family caregivers
P. J. Fancey, J. M. Keefe, & M. L. Robertson, Department of Family Studies and Gerontology, Mount Saint Vincent University, Halifax, B3M 2J6.
Research demonstrates that caregiving is multi-dimensional. Several factors influence the caregiving experience. One aim of this project is to develop an assessment tool to be used by home care professionals, with a range of populations, to systematically identify and evaluate caregivers’ needs. Based on established criteria, an international search of assessment tools for family caregivers was conducted. None of the multi-dimensional assessments identified were validated. The development of our assessment tool relied on four sources of information: 1) literature on caregiver needs; 2) 82 measures of stress and burden; 3) 63 non-validated assessment tools from agencies; and 4) 10 focus groups with caregivers and practitioners. Key components of the assessment tool include: characteristics of the caregiver and care receiver; caregiving work; family relations; proximity; other responsibilities; financial contribution; personal health; and availability of services and supports. After initial pretesting and training, over 30 staff from Home Care Nova Scotia and select CLSC’s in Quebec formally tested the instrument with caregivers of clients on their caseloads. In total, 175 caregivers from urban and rural areas participated in two assessments conducted by two different case managers. Analysis will be conducted on the assessment tool to test its validity and inter-rater reliability.
4. Issues raised during the development and implementation of screening and assessment tools
N. Guberman, Département de Travail Social, Université du Québec à Montréal, CP 8888 Succ. “A”, Montréal, Québec, H3C 3P8.
As a multiple-site, national, bilingual project which evolved from a partnership between researchers and a home care agency (CLSC René-Cassin), the research was confronted with a number of challenges. Foremost was the difficulties associated with assuring standardization and a common comprehension of procedures among the three sub-teams, while operating in two languages and in collaboration with eight home care agencies. This was true for the work of the overall team itself, but all the more so when the researchers went to work in the field, where they were faced with multiple organizational cultures and varying levels of sensitivity to caregivers’ situations within the agencies. For the testing stage, this meant attempting to arrive at a standardized manner of completing a global psycho-social evaluation with both closed and open questions involving thirty assessors from different disciplines. A second area of issues arose around the ethical questions raised throughout the development and implementation stages. As well, introducing new tools aimed at caregivers into the daily practice of already overburdened home care assessors and service providers was in itself a major challenge. This paper will present the strategies the team developed to face these challenges, and the outcomes that were achieved.
Presentation at the Canadian Homecare Association 10th Annual Conference, Calgary (December 4, 2000).
Development of screening and assessment tools for informal caregivers
Guberman,N., Barylak, L.., Keefe, J., Fancey, P., & Nahmiash, D.
This presentation will showcase two new tools developed to assess caregivers : the Caregiver Screening Tool and the C.A.R.E. Tool. The screening tool is aimed at helping intake workers target which caregivers need intervention and immediate support. It includes basic socio-demographic information and descriptive information about the caregiving context and twelve statements related to caregiving that are multi-dimensional and can capture risk to the caregivers well-being.. The key components of the assessment tool include: characteristics of the caregiver and care receiver; caregiving work; family relations; proximity; other responsibilities; financial contribution; personal health; and availability of services and supports. The presentation will describe the methodology used to develop both Tools.