When Home
Is Not
a Home
Abuse and Neglect in Long-Term
Care A Resident's Perspective
Our mission is to help the people of Canada maintain and improve
their health.
Health Canada
When Home Is Not a Home: Abuse and Neglect in Long-Term
Care — A Resident's Perspectivewas prepared by Jean Kozak
and Teresa Lukawiecki for the Family Violence Prevention Unit,
Health Canada.
Également en français sous le titre
Quand chez soi n'est pas un
chez-soi: Mauvais traitements et négligence dans les établissements
de soins de longue durée — Le point de vue des pensionnaires
The opinions expressed in this monograph are those
of the authors and do not necessarily reflect the views of Health
Canada.
Contents may not be reproduced for commercial purposes,
but any other reproduction, with acknowledgements, is encouraged.
This publication may be provided in alternate formats
upon request.
For further information on family violence issues,
please contact:
National Clearinghouse on Family Violence
Family Violence Prevention Unit
Health Issues Division
Public Health Agency of Canada (PHAC)
Health Canada
Address Locator: 1909D1
9th Floor, Jeanne Mance Bldg., Tunney's Pasture
Ottawa, Ontario K1A 1B4 CANADA
Telephone: 1-800-267-1291 or (613) 957-2938
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Web Site: http://www.phac-aspc.gc.ca/nc-cn
© Her Majesty the Queen in Right of Canada,
2001
Cat. H72-21/176-2000E
ISBN 0-662-29349-5
Acknowledgements
Most of the strengths of the project Abuse Prevention
in Long Term Care (APL) reported in this document and the
accompanying two others are the result of the efforts of people
from differing interests and perspectives who worked together
toward the common goal of making LTC a better experience. We acknowledge
with sincere appreciation all the people, from residents to LTC
staff to families and community representatives, who contributed
their time and ideas to the many phases of APL. Their comments
and concerns were the foundation for all the resources developed
during the two phases of the APL project.
We especially would like to acknowledge the invaluable
work performed by the following site coordinators during the duration
of the two APL projects. It was as a result of their assistance
and dedication that APL was an unqualified success across Canada.
British Columbia Pearl McKenzie
Manitoba Elizabeth McKean
Ontario Teresa Lukawiecki
Quebec Carole Deschamps
Newfoundland Theckla Lundin
We would also like to thank the five coordinating
sites and other site representatives who contributed immensely
to the success of the projects.
British Columbia St. Vincent's Hospitals, Vancouver,
Jacqueline Senning
Manitoba Riverview Health Centre, Winnipeg, Elizabeth
Boustcha
Ontario Sisters of Charity of Ottawa Health Services,
Ottawa, Jean Kozak
Quebec Regroupement des Trois Rives, Vaudreuil,
Lise Bélisle
Newfoundland Hoyles-Escasoni Complex, St. John's,
Anne Morrison and Pat Amos
The content of this document is a synthesis of the
material and products produced during the various phases of the
APL project.
Kozak, J.F. & Lukawiecki, T. (1997). Abuse
Prevention in Long Term Care: Educational Package.
When Home
Is Not a Home — Abuse and Neglect in Long-Term Care
Kozak, J.F. & Lukawiecki, T. (1997). Final Report of the
APL Project. Report submitted to New Horizons — Partners
in Aging, Health Canada.
Kozak, J.F., Lukawiecki, T., & Dalle, D. (1998).
Final Report of the Abuse Prevention in Long Term Care Train-the-Trainer
Project. Report submitted to the Population Health Fund, Health
Canada.
Lukawiecki, T., Kozak, J.F., Wahl, J., & Dalle,
D. (1998). Policy and Procedures Guidelines for Responding
to and Preventing Resident Abuse and Neglect in Long Term Care.
When Home Is Not a Home — Abuse and Neglect
in Long-Term Care
Table of Contents
Section 1
-
Introduction 7
-
Section 2
-
Section 3
-
Conclusion 29
-
Bibliography 31
-
Appendix A
-
Structure of APL 33
When Home
Is Not a Home — Abuse and Neglect in Long-Term Care
Section 1
Introduction
This monograph is the first of a three-part series
on abuse and neglect from the perspective of residents and others
who live and work within Canada's long-term care (LTC) sector.
This series of monographs was funded through the
Family Violence Prevention Unit (FVPU) of Health Canada. Through
the FVPU, Health Canada leads the Family Violence Initiative (FVI),
coordinating the relevant activities of 13 federal Departments
and three central agencies that are formally involved in the Initiative.
Under the current FVI, Health Canada remains committed to addressing
family violence issues, including the abuse of older adults. In
consultation with the Division of Aging and Seniors, the FVPU
undertakes research on the consequences of abuse and neglect of
older adults to enhance treatment and prevention. The FVPU has
developed and revised a number of resources on the abuse of older
adults for dissemination through the National Clearinghouse on
Family Violence.
For almost 20 years, public awareness of abuse and
neglect of older adults (also referred to as elder mistreatment
in the literature) has been increasing. Research and community
service-based initiatives on abuse and neglect within Canada have
focussed primarily upon seniors living in their communities and
not in institutions.
To date, no systematic surveys have been conducted
on the extent to which abuse or neglect occurs within institutional
settings caring for older Canadians. What research there is, both
in Canada and internationally, is typically limited to retrospective
chart audits or staff surveys. This paucity of information severely
limits our understanding of abuse and neglect of seniors residing
in Canadian institutional settings and, in turn, affects our ability
to design and implement effective intervention and prevention
programs.
The purpose of this series of monographs is to present
the findings from two national educational projects known as Abuse
Prevention in Long-Term Care (APL) in an attempt to begin addressing
this gap in knowledge. These projects were funded by Health Canada
through the New Horizons — Partners in Aging Fund and by
the Population Health Fund. During the life of the projects, from
1995 to 1998, information was collected from residents, long-term
care (LTC) staff, families and
When Home Is Not a Home
— Abuse and Neglect in Long-Term Care
advocates as to their perceptions of abuse and neglect, the dynamics
behind the occurrence of abuse and neglect, and how one can both
stop and prevent abuse and neglect from occurring. The monographs
are not meant to be a review of the published literature on abuse
and neglect. Those seeking such a review are referred to publications
such as the excellent Canadian Association on Gerontology's Abuse
and Neglect of Older Canadians: Strategies for Change (1995)
and the Public Health Agency of Canada's Abuse and Neglect of Older Adults in Institutional
Settings: A Discussion Paper Building from English Language Resources
by Charmaine Spencer (1994).
Although we are unable to provide any indication
of the extent of the problem (prevalence and incidence), the information
contained herein can be used to understand how older individuals
residing in LTC perceive and describe abuse and neglect, and to
provide directions about how this complex problem could be addressed.
It is critical to understand that although anyone can intentionally
or unintentionally be the cause of abuse or neglect, the focus
of this monograph is on how this issue is viewed from a resident's
perspective.
This monograph is the first of a three-part series.
This first monograph, When Home Is Not a Home: Abuse and Neglect
in Long-Term Care A Resident's Perspective, summarizes
primarily the perceptions of LTC residents from across Canada
as to what they feel constitutes abuse and neglect. The purpose
of this monograph is to provide some understanding of the myriad
factors and dynamics that residents feel underlie abuse and neglect
situations.
The second monograph, Stand by Me: Preventing
Abuse and Neglect of Residents in Care Settings, explores
comments made by LTC residents, staff, families, advocates and
others on how they believe individuals and facilities can best
stop and prevent abuse and neglect from happening to older residents.
The third monograph, Returning Home: Fostering
a Supportive and Respectful Environment in the Care Setting,
explores the major factors identified by residents, staff, families,
volunteers and advocates that minimize the dynamics that contribute
to the abuse and neglect of older residents. This monograph explores
the mechanisms, attitudes and beliefs that, according to those
who live, work or visit LTC, must be present if we are to move
toward the ideal of an abuse-free environment for all.
The ultimate goal of the three monographs is to
stimulate discussion and action. As well, they are meant to encourage
people to work toward fostering an environment that promotes the
well-being of residents and is supportive and respectful of everyone.
Although the documents primarily reflect a resident's
When Home Is Not a Home — Abuse and Neglect
in Long-Term Care
perspective, they are written for all people associated with LTC
who wish to address the issue of resident abuse and neglect. This
includes both individuals within facilities (e.g. residents, staff,
families and volunteers) and those external to facilities (e.g.
advocates and representatives of government regulatory agencies
and professional associations).
1.1 SUMMARY OF KNOWLEDGE ON ABUSE AND NEGLECT
OF SENIORS RESIDING IN INSTITUTIONS
It is currently estimated that from 9% to 11% of
seniors reside in institutional settings across Canada (Mental
Health Division, Health Canada, 1994). Even with the current trend
toward home-based care, there will still be a substantial number
of seniors who require institutional care. The projected increase
in the number of seniors requiring institutional care (e.g. Bélanger
and Dumas, 1997) means that quality of life issues must be addressed
as soon as possible, including the prevention of the abuse and
neglect of older adults in LTC facilities.
Within the context of institutional care, seniors
can be found in a spectrum of residences that ranges from non-medical
residential settings to nursing homes to acute and chronic care
facilities. Although abuse and neglect of seniors residing in
the community has been the focus of much research and discussion
in Canada, little is known about the problem in institutional
settings. According to national and international research, the
prevalence of abuse and neglect among community-dwelling seniors
(those not living in institutions) ranges from 1% to 20%, depending
on how abuse and neglect are defined and the methodology used
to investigate it (Kozak, Elmslie and Verdon, 1995).
Only one methodologically sound study has been done
on the type of abuse and neglect faced by seniors residing in
institutional settings. In a randomized sample of 577 nursing
staff (RNs and RNAs) from 31 nursing homes, Pillemer and Moore
(1989) studied the number of physical and psychological abuse
cases reported by nursing staff in a U.S. city. The authors reported
that physical abuse of older patients was seen by 36% of the staff:
use of restraints (21%), pushing, grabbing, shoving and pinching
(15%), and slapping and hitting (15%). Eighty-one percent of the
staff reported seeing or hearing forms of psychological abuse.
In Canada (Table 1), some smaller studies have attempted
to explore the issue of abuse and neglect in Canadian institutions.
However, many limitations in these studies have been identified
in the literature (Kozak, Elmslie & Verdon, 1995; Beaulieu
& Bélanger, 1995). Bélanger et al. (1981) reported
that in a survey of 140 professionals, 35.5% of the known incidents
of abuse or neglect reported by
When Home Is Not a Home
— Abuse and Neglect in Long-Term Care
Table 1 — Abuse and Neglect in Canada
In
When Home Is Not a Home — Abuse and Neglect
in Long-Term Care
their sample occurred in institutional settings, whereas 28.4%
occurred either in private institutional settings or the home.
Respondents in the survey reported that over 57% of the acts of
abuse and neglect were committed by staff or other care providers.
In Manitoba, Shell (1982) reported that of 402 incidents
reported by professionals whom she surveyed in institutional settings,
40.2% were financial abuse, followed by 37.4% psychosocial and
22.4% physical. In a more recent study by the College of Nurses
of Ontario (1993), 804 RNs and RNAs were surveyed about abuse
of residents by staff. Nearly half of the respondents reported
witnessing one or more events, with 85% of the reports coming
from hospitals, 29% from nursing homes and 7% from homes for the
aged.
Although the true extent of abuse and neglect in
Canadian institutions where care toward seniors is provided is
unknown, it is evident from the above that as in the community
seniors in the institutional sector are also at-risk of abuse
and neglect. Moreover, it is obvious that the voice of residents
have not been used in any consistent manner to identify either
the nature of abuse and neglect from their perspective, or to
identify methods for dealing effectively and sensitively with
the problem.
How abuse and neglect is experienced and perceived
by seniors in LTC, and how the problem could be addressed, were
the subject of the APL projects.
1.2 APL PROJECT OVERVIEW
Abuse Prevention in Long-Term Care Project (1995_96)
In 1995, funding was obtained from New Horizons
— Partners in Aging, Health Canada, to develop a resident-focussed
educational package that had the goals of:
- • sensitizing people to
the problem of abuse and neglect of older persons residing
in institutional settings;
- • generating discussion
which can lead to further understanding and a commitment to
find solutions;
- • raising awareness of
the need for a supportive and respectful environment for seniors
in institutional settings and ways to foster such an environment.
In the first phase of the project, focus groups
were held with 494 LTC residents, staff (clinical and administrative),
institutional volunteers, family members and advocates in British
Columbia, Alberta, Manitoba, Ontario (French and English),
When Home Is Not a Home
— Abuse and Neglect in Long-Term Care
Quebec (French and English) and Newfoundland. Because of health
limitations of some residents, individual interviews were conducted
where necessary.
In the sessions or interviews, participants were
asked to share their thoughts and experiences along the following
themes:
- • What institutionalization
means to a resident;
- • Definitions of abuse
and neglect from a resident's perspective;
- • Perceived causes of
abuse and neglect of residents;
- • Intervention and prevention
of abuse and neglect of residents; and
- • What constitutes a supportive
and respectful environment.
From the information provided in these sessions,
a national expert panel (consisting of LTC residents, care staff,
volunteers/advocates, administrative staff, family members and
researchers) developed the Educational Package for Abuse Prevention
in Long-Term Care. This unique package consists of two videos
and nine discussion modules. It fosters a supportive and respectful
environment from a resident's perspective.
The Educational Package was submitted for
independent critical review and underwent pilot training/evaluation
sessions in Vancouver, Winnipeg, Ottawa, Montreal and St. John's.
It was very well received and positively rated by residents, staff,
family members and volunteers alike. Based on feedback from the
pilot groups, the package was revised and then distributed across
the country. Appendix A contains information about the APL project
teams and sites.
Abuse Prevention in Long-Term Care Train the
Trainer Project (1997-98)
Building on the success of the original project,
funding was obtained from the Population Health Fund, Health Canada,
to train trainers in the use of the educational package. Six hundred
and sixty-five (665) people across Canada were trained in the
use of the Educational Package. The workshops were developed
with the intent of training trainers who would become resources
for their communities on the issue of abuse and neglect of older
residents in LTC. Training occurred in the Yukon and Northwest
Territories and all of the Canadian provinces except Prince Edward
Island.
More than 97% of the participants evaluated the
training workshops as either good or excellent. They indicated
that they would be returning to their communities to train others
on abuse and neglect and lend their expertise in working toward
solutions. In a one-month follow-up survey, more than half of
the respondents contacted had already used what they learned,
with the remaining participants
When Home Is Not a Home — Abuse and Neglect
in Long-Term Care
reporting that they had not had enough time to implement the workshop
information since their training.
During this second phase, participants provided
educational facilitators with additional insights into the problem
of abuse and neglect and shared innovative ways of dealing with
the issue. In addition, a national steering committee of the APL
project also developed policy and procedure guidelines1
to assist facilities in developing sensitive and appropriate institutional
policies for dealing with abuse and neglect of residents. The
information contained in this series of monographs has been prepared
from the findings of these two phases.
Terminology
Within this document, LTC is defined as any publicly
funded facility that provides basic nursing care to older adults.
The facilities may range from residential homes for the aged,
to nursing homes, to extended care facilities located within hospital
settings.
For the focus groups, the resident groups included
people more than 55 years of age. Family groups were composed
of family members and advocates. Staff groups
1. Lukawiecki, T., Kozak, J., Wahl, J., & Dalle,
D. (1998). Policy and Procedures for Preventing Abuse and Neglect
within LTC Institutions. Dept. of Research, SCO Health Services,
Ottawa, Ontario.
When Home Is Not a Home
— Abuse and Neglect in Long-Term Care
included direct care staff (RN, RPN/LPN/CA), non-direct care staff
(social work, pastoral care, psychology, administration) and volunteers.
The term "participant" is generally used
to refer to a person who participated in the focus group discussions,
pilot testing or train-the-trainer workshops.
When Home Is Not a Home — Abuse and Neglect
in Long-Term Care
Section 2
Abuse and Neglect
Definitions are important because they help people
identify when a situation is abusive or neglectful. Abuse and
neglect are not easy to define because an event viewed as abusive
or neglectful by one person may not be viewed as such by another.
Culture, religious beliefs and personal values are some of the
factors that affect how people perceive events. Because of these
differences, it is not unexpected that residents, staff and families
may have different perceptions of what action or lack of action
constitutes abuse or neglect.
Generally speaking, abuse or neglect is any action
or inaction that jeopardizes the health or well-being of another
individual. The misuse of power underlies most situations of abuse
and neglect. The term "abuse" is used to apply to situations
in which people use their power to take advantage of another person
or persons. A misuse of power can occur between individuals or
at a systemic or policy level.
Abuse and neglect are also more likely to occur
when people who interact with the resident focus on the task to
be done rather than the resident. Paternalism toward a care recipient
can erode the confidence residents have in their ability to take
care of some of their own personal needs. Staff, other residents,
family and volunteers who do too much for a resident can be unintentionally
abusive. On the other hand, not attending to needs
that older persons cannot meet themselves is a form of neglect.
Abuse and neglect can take many forms, ranging from
the psychological to the physical (Figure 1), and can be:
- • criminal or non-criminal;
- • a single action or a
pattern of behaviour;
- • intentional or unintentional;
- • subtle, seemingly insignificant
acts or serious acts;
- • committed by an individual,
a group or an organization (systemic abuse).
Criminal behaviours are outlined in the Criminal
Code. Some include assault, sexual assault, neglect and forcible
confinement. In most instances, for a behaviour to be considered
a criminal act, the person responsible must have had the intent
to do harm. For example, it is an assault when a cognitively aware
resident hits
When Home Is Not a Home
— Abuse and Neglect in Long-Term Care
another person. However, when this same action is taken by a resident
who is cognitively impaired and suffers from a mental disorder,
the resident is not held to be criminally responsible. Staff in
the facility, however, still have the responsibility to try to
implement measures to ensure that the behaviour is stopped. As
well, even if the abuser is cognitively impaired, the person who
was abused may still wish to make a formal complaint which may
lead to charges being laid.
In some instances, institutional or governmental
policies and regulations can create, facilitate or even perpetuate
harmful situations for residents. Typically, when a harmful situation
occurs, it is a by-product of a procedure or procedures designed
to provide care. Often, these procedures appear legitimate
or are so deeply ingrained in the day-to-day activity of the facility
that people do not question whether or not the procedures are
appropriate for all residents in LTC. For example, conflict may
arise between a resident's eating habits and policies regarding
meal times. Residents with a lifelong habit of eating either a
late or no breakfast may become frustrated when a morning meal
is available only at certain times or are compelled to eat it
because of institutional policies.
2.1. Definitions of Abuse and Neglect
The majority of the comments made about the sources
of abuse and neglect focussed primarily on the interaction between
residents and staff (68% of comments), followed by procedures
and policies in LTC (27%), other residents (20%) and family (16%).
Because participants in all of the focus groups were asked to
discuss abuse and neglect toward residents, 78% of all comments
made were on this issue. Some of the focus groups (composed of
residents, staff, family and advocates) made comments regarding
abuse and neglect of staff (17%) and family (6%). Participants
within these groups recognized that the phenomenon of abuse and
neglect is highly complex and could be directed to anyone by anyone.
It must be stressed that great caution is needed when reporting
percentages as the lack of a comment does not necessarily mean
that it is not important to an individual or a group of individuals.
Only a small number of the comments made by residents
and staff identified what would be acknowledged by most people
as overt acts of aggression or sexual abuse toward residents.
Although this finding may reflect sensitivity or fear in reporting
such incidents, residents participating in the two projects stated
that the abuse or neglect that characterized their day-to-day
experiences and those of others in LTC was less overt.
When Home Is Not a Home — Abuse and Neglect
in Long-Term Care
In the opinion of the participants, the major forms of abuse and
neglect arose from three basic factors:
- • poor attitudes or personality
dynamics;
- • lack of competence;
and
- • systemic or institutional
processes that create and foster a power imbalance between
residents and staff.
Overall, perceptions of what constituted abuse and
neglect could be categorized according to the definitional model
developed in Abuse and Neglect of Older Adults in Institutional
Settings: Discussion Paper Building on English Language Resources2.
The major forms of abuse and neglect identified were:
- • Medical
- • Financial
- • Physical
- • Civil/Human rights
- • Psychological
- • Systemic
- • Sexual
Participants defined abuse and neglect as the omission
or commission of an act that harmed, denied or placed a resident
at risk. The perceived effects of these actions or inactions ranged
from loss of dignity and respect to the failure to meet basic
needs. Staff clearly identified forms of abuse and neglect but
tended to imbed statements within perceived reasons (e.g. difficult
behaviour problems, families and institutional process). Families
discussed neglect and more complex forms of abuse (psychological,
civil/human rights, systemic) rather than overt, obvious indications
of physical abuse. Physical abuse (e.g. rough handling) was likely
to be perceived by participants who had greater amounts of contact
with residents (e.g. staff, volunteers).
"The first night I arrived I called the
nurse because I didn't feel well. She said: `I don't have time,
when the aide comes back from break she'll come to you.' I began
to cry like a child and I said [to myself] this is the nursing
home." (resident)
2. Mental Health Division, Health Canada. (1994).
Abuse and Neglect of Older Adults in Institutional Settings:
Discussion Paper Building on English Language Resources. Ottawa:
Minister of Supply and Services.
When Home Is Not a Home
— Abuse and Neglect in Long-Term Care
Neglect
Neglect was frequently mentioned by all groups as
occurring within LTC, with volunteers and advocates making the
most frequent comments about it (80%). The majority commented
that neglect was unintentional but caused individuals to feel
helpless. Participants said that forms of neglect included being
ignored or forgotten, having call bells or lights left unanswered,
and the failure of staff to attend to their needs. Residents and
families identified leaving residents alone (during staff breaks)
on toilets, lying/sitting in soiled clothes, and infrequent physician
contact as other forms of neglect (and disrespect).
Percentage of Comments on Neglect by Respondent
| Type of Respondent |
% |
| Residents |
40 |
| Clinical staff |
29 |
| Administration |
50 |
| Family |
43 |
| Volunteers/Advocates |
80 |
A small number of residents identified active
forms of neglect: being locked in rooms; withholding of food,
bathing, medications; and not receiving assistance when staff
were told of uncomfortable positions. Active neglect was not identified
by APL participants who were staff or families.
Staff identified neglect by families as a problem
for both residents and themselves. Staff reported having to handle
the emotional consequences of family members forgetting promises
of visits or leaving residents and never returning. Clinical,
"bedside" staff made fewer comments about neglect (29%)
than administrative staff (50%).
"Sitting on the toilet where you did your
pee, dressed, waiting… and they've forgotten about you."
(resident)
"They'll just wheel them in [to their room]
and just leave them facing the wall. I mean would you spend the
next three hours staring at a wall?" (family)
"You don't have time to wait for them [toilet].
You have no time to stay and have a chat. I have another resident
and I have to go." (staff)
When Home Is Not a Home — Abuse and Neglect
in Long-Term Care
Physical Abuse
Residents across the regions repeatedly stressed
that they have never experienced overt physical abuse. No group
reported seeing signs of obvious physical abuse (bruises or abrasions).
Discussing overt physical abuse was difficult for residents, whereas
"inconsiderate" handling was easily discussed.
Percentage of Comments on Physical Abuse by
Respondent
| Type of Respondent |
% |
| Residents |
16 |
| Clinical staff |
24 |
| Administration |
- |
| Family |
43 |
| Volunteers/Advocates |
20 |
Very few residents stated that they knew
or saw someone being slapped, and when they did, the action was
said to result from what was perceived to be aggressive or inappropriate
behaviour of a resident (e.g. resident was slapped by a staff
member because she [resident] was unable to stop crying). Residents
acknowledged that physical abuse, as well as psychological abuse,
was a "two-way street" and staff may only be reacting
to residents who were aggressive or abusive.
"I've never been hit by any of the staff,
but I was handled pretty rough by one." (resident)
"I stepped into a hall and a staff member
was screaming at a resident. I looked at the [nursing] desk…
and I realized they couldn't hear what was happening. So I stepped
back and spoke to my friend [resident] and she said `I think that
Mrs. So-and-So hit the intern.'" (advocate)
"I've never seen somebody hit somebody else,
but I've seen staff members who are very rough with patients.
They will go in the middle of the night, rip off the covers, push
them over to turn them and then say, `I'm going to turn you now.'
Like a sack of potatoes." (staff)
Psychological Abuse
Participants identified psychological abuse, resulting
in loss of dignity or self-respect, as a common form of abuse.
Residents said some forms of psychological
When Home Is Not a Home
— Abuse and Neglect in Long-Term Care
abuse included being treated like children, talked down to, taken
advantage of, not being taken seriously, demeaned, humiliated,
disrespected or made to feel like a nuisance. More serious forms
of psychological abuse included being restricted to rooms when
staff escorts were unavailable or not being able to make phone
calls. These comments were echoed by staff and families.
Percentage of Comments on Psychological Abuse by
Respondent
| Type of Respondent |
% |
| Residents |
40 |
| Clinical staff |
53 |
| Administration |
50 |
| Family |
71 |
| Volunteers/Advocates |
80 |
Verbal abuse, as a form of psychological abuse, was
frequently discussed by participants and included incidences such
as name calling, swearing, "talking nasty" and yelling.
Shouting, intimidation, verbal threats and gossiping about residents
in front of others were also identified as forms of abuse by families
and residents.
Families indicated that another form of psychological
abuse was residents being treated like children or enemies by staff.
Volunteers felt that a similar antagonistic relationship existed
between themselves and staff.
"The nurse will say, `I'll let you brush
your teeth.' They treat me like a child, like I'm four years old."
(resident)
"And after a while you get a name for yourself.
When you come in they'll say, `Here comes the Bitch.' But what are
you supposed to do." (family)
"A resident hearing something being said about
them by staff such as, `I'm not bathing her tonight. I hate her.'
The resident shrivelled up." (staff)
Sexual Abuse
Only a small number of residents identified sexual
abuse as a form of abuse that might occur in LTC. The types of abuse
mentioned were rape and sexual harassment by other residents (males
to females). One resident raised the concern of residents who harass
children of visiting family members.
When Home Is Not a Home — Abuse and Neglect
in Long-Term Care
Although not identified as sexual abuse, comment was made about
female residents discomfort with receiving personal care (bathing,
dressing, toileting) from male staff. Staff raised the issue of
inappropriate touching and touching without permission (touching
in general and not in a sexual manner).
Percentage of Comments on Sexual Abuse by Respondent
| Type of Respondent |
% |
| Residents |
2 |
| Clinical staff |
6 |
| Administration |
- |
| Family |
- |
| Volunteers/Advocates |
- |
"I don't like it. Let a woman go to a woman
and a man to a man. When you got to ask a man to put a diaper on
you, it's not nice." (resident)
"One of the residents does not like me, she
does not like me touching her when I try to care for her… so
only the female staff go to her." (male staff)
Financial Abuse
Reference to financial abuse was made only by residents.
The comments referred to theft of property and money; having funds
given out "like an allowance"; lack of access by residents
to their funds; and staff breaking things, or using personal property
without permission. Residents mentioned that other residents would
enter rooms to rifle through and remove personal belongings. Comments
were also made about receiving fewer services and food, and the
differential treatment for residents based on ability to pay (e.g.
private versus shared rooms). When specifically asked, staff and
others agreed that financial abuse did occur, but that the cause
tended to be theft by family members or strangers. Removal of items
by other residents was not perceived as theft by staff. Instead,
staff believe such actions are unintended acts resulting from a
disease process such as Alzheimer's.
When Home
Is Not a Home — Abuse and Neglect in Long-Term Care
Percentage of Comments on Financial Abuse by Respondent
T
| Type of Respondent |
% |
| Residents |
6 |
| Clinical staff |
- |
| Administration |
- |
| Family |
- |
| Volunteers/Advocates |
- |
"Never bring your best to an institution."
(resident)
Possible Civil/Human Rights Abuse
All participants commented on the feelings of confinement
and restriction faced by residents in LTC. A major complaint was
the lack of respect for privacy. Examples in which there were the
possibility of human rights violations included staff entering rooms
without knocking or introducing themselves; basic needs, such as
toileting and bathing, done without consideration for privacy; and
staff freely discussing in front of others matters that residents
considered to be personal.
Percentage of Comments on Possible Civil/ Human
Rights Abuse by Respondent
| Type of Respondent |
% |
| Residents |
14 |
| Clinical staff |
12 |
| Administration |
- |
| Family |
14 |
| Volunteers/Advocates |
20 |
Residents, staff and families all identified the withholding
of information from residents as another possible violation of civil/human
rights. Residents stated they felt left out and treated as "second
class citizens." Families felt they were not fully informed
about care issues. In a similar vein, staff commented that families
often request that the resident not be approached about care decisions.
This appeared to be more typical of residents suffering from moderate
to severe cognitive impairment.
"I'm not allowed down unless my family is
with me. I listen to the sounds around me and think `My God, if
I'm not insane, I'll be insane if I live here another minute.' And
then I go to my room and find a good program on TV." (resident)
When Home Is Not a Home —
Abuse and Neglect in Long-Term Care
"There's no one around who can tell you what is happening and
why." (family)
"We try to inform the family and resident,
but at times it is hard to get the family to come and the resident
does not understand. On top of this, we are running around trying
to meet the needs of everyone." (staff)
Medical Abuse
Residents and families identified the perceived overuse
of medication as a form of medical abuse. Examples of medical abuse
identified by APL participants include errors in medication; medications
that were not updated; the lack of or sporadic contact with physicians;
and the use of chemical restraints. A small number of residents
felt so strongly about their problems in living with other residents
with severe behavioural problems (wandering, verbal and physical
aggression) that they suggested chemical restraints should be used
to manage these residents.
Percentage of Comments on Medical Abuse by Respondent
| Type of Respondent |
% |
| Residents |
16 |
| Clinical staff |
29 |
| Administration |
50 |
| Family |
57 |
| Volunteers/Advocates |
20 |
Staff, both clinical and administrative, felt that
there was an over-reliance on medication to deal with problems that
might arise with residents (e.g. agitation) and that alternative
approaches should be explored. Moreover, the use of restraints in
LTC was of concern to both groups. Staff felt that there needed
to be greater vigilance regarding the use of restraints and were
concerned about unlicensed facilities which were not subject to
ongoing evaluations or bound by professional codes of ethics. Both
families and volunteers/advocates felt that staff are too likely
to medicate residents.
"They give you these pills to calm you down
when you just want to cry." (resident)
When Home
Is Not a Home — Abuse and Neglect in Long-Term Care
"One of my mother's bed [room] partners
was over-medicated. She was given the wrong medication, but they
never admitted it." (family)
"Sometimes they don't want to take the medication,
but it is ordered and so we have to give it." (staff)
Systemic Abuse
Systemic abuse was one of the major issues commented
on (75% of comments). Examples included residents being called "patients";
residents being forced to live in small rooms; the inability to
control noise; rigid adherence to schedules; rushing through meals
or toileting; constant waiting for care; and discontinuity in care
because of part-time staffing. As would be expected of a population
residing in an institutional setting, many of their comments focussed
on the poor quality of food and the inability to eat what was wanted
when the person wanted it. As stated by a staff member, "why
shouldn't a 90-year-old diabetic have a chocolate if she wants one?"
Staff felt that the admission process, involving many
different staff members asking questions continuously, was tiring
and upsetting for residents. As well, staff commented that the odd
room colours ("surgical green") contributed to an institutional
rather than homey feeling.
Percentage and Type of Comments on Systemic Abuse
| Type of Respondent |
% |
| Residents |
47 |
| Clinical staff |
27 |
| Administration |
22 |
| Family |
20 |
| Volunteers/Advocates |
17 |
Many participants commented that it is the use of
inflexible policies and procedures that creates situations in which
the individual need and dignity of a resident is not respected.
For example, policies on the scheduling of meals make it difficult
to accommodate individuals who have never eaten breakfast and prefer
a light mid-morning meal. A policy on moving residents to other
rooms in other units can be highly disruptive to the resident as
it does not recognize the possibility that
When Home Is Not a Home — Abuse and Neglect
in Long-Term Care
social relationships on that unit were formed and are now being
broken. Moreover, staff indicated that policies may inadvertently
cause conflict by contradicting what procedures take precedence
over others. Great care is needed in examining how policies interact
and the consequences that may result.
Residents and staff also stated that grouping residents
based on functional level or disease categories creates problems,
especially when some residents are younger than others. For example,
residents complained about having to share rooms with other residents
who were severely cognitively impaired or who were much older, making
it difficult to communicate or share common experiences with one
another. In addition, all participants mentioned several conditions
that interact to create situations in which individual rights and
needs can come into conflict with the systemic process of providing
care. These conditions include low staffing levels; the perceived
lack of available, consistent care; inadequate access to spiritual
support (other than the availability of chapels or weekly services);
and conflicts in scheduling (e.g. appointments with professional
services only in the morning, causing nursing staff to rush patients).
"Little things affect you more when you're
old. When they told me I had to change rooms, I cried. It's hard
to take things when you're 90." (resident)
"… you are in a sort of power relationship
when that happens. It's an abuse of power. And I think it's insidious,
I don't think a lot of people actually recognize it the enforced
control." (advocate)
"They might perceive it as abuse, but we might
just perceive it as the way in which we can get our work done."
(staff)
2.2. PERCEIVED CAUSES OF ABUSE AND NEGLECT
Focus group participants identified the following
as major causes or contributing factors with regard to abuse and
neglect within LTC:
- • Attitude/Personality
- • Lack of competence
- • Systemic or institutional
processes
- • Cognitive and communication
deficits
When Home
Is Not a Home — Abuse and Neglect in Long-Term Care
Attitude/Personality
Residents and staff/volunteers all recognized that
a poor attitude toward older adults among staff in LTC is a significant
contributor to abuse and neglect. Seventy percent of the comments
on perceived contributing factors made by all groups related to
poor attitudes or personality conflicts.
Staff who did not value the resident as an individual,
or just focussed on the financial aspects of their job, were identified
as being inconsiderate, disrespectful and less caring. Conflict
was also seen to arise from personality incompatibilities between
residents and staff.
Participants in the APL project, especially residents,
stated that stereotyping of residents by others as disabled and
dependent resulted in treating residents like "children,"
incapable of performing tasks or making decisions on their own.
This process, in turn, leads to the dependency of residents for
day-to-day functions and places care providers in positions of power
over residents. This imbalance in power was acknowledged by all
as a major contributing factor in creating conflicts that could
escalate into situations of abuse and neglect.
Residents felt strongly that staff "talked down"
to them and used phrases such as "dearie" in a patronizing
manner. Even though residents recognize that the use of such a term
was meant to reflect warmth toward them, they nevertheless feel
that it more often is indicative of a perception that they are helpless
children.
Lack of Competence
Participants stressed a need for staff to be qualified
in the delivery of care as well as understanding disease processes
and their management and interventions (e.g. behavioural problems
associated with Alzheimer's disease). Staff and residents alike
identified the need to train staff using an approach that recognizes
and values the individual, and not one that focusses on technical
care alone.
Concern was also raised by APL participants regarding
the use of temporary part-time staff. Although it was recognized
that financial constraints have forced facilities to rely on lower
paid replacement workers, participants were concerned that these
workers although able to provide basic nursing care would not have
received appropriate training in disease processes, abuse and neglect,
or the other myriad issues important for the provision of good,
sensitive care. Many comments were made that facilities should adopt
a policy whereby hiring of replacement staff would be done only
with those private employment services that demonstrate that their
personnel are trained or receive training in these issues.
When Home Is Not a Home — Abuse and Neglect
in Long-Term Care
Systemic or Institutional Processes
All participants identified the institutional process,
beginning at admission, as a major potential contributor to situations
that may lead to abuse and neglect. Many were concerned that staff
cutbacks and the increased time burdens for the remaining staff
were major limitations in the delivery of quality care, limitations
that result in inadequate care and increased frustrations. For example,
residents saw the long delays in attending to their needs as a direct
result of insufficient staff. Staff commented on the growing institutional
emphasis on time accountability rather than quality patient care
as a major source of frustration and burn-out.
Residents commented that part-time staffing affected
continuity of care. The use of part-time help meant frequently dealing
with new personnel who did not know preferences or specific care
needs. Moreover, residents felt they had to accept personal care
from strangers.
All participants agreed that the institutional process
was one that forced residents to adhere to rigid, time-constrained
schedules and did not encourage staff to take time to sit and talk
to residents. All stated that the rigid adherence to schedules or
orders reduced opportunities to respect individual wishes or enhance
individuality within the facility. For example, staff had to wake
and feed all residents at set times even if some did not want to
eat "If I do not want to get up I can stay in bed." One
staff member observed, "Here, they [residents] have no choice."
The taking of medication, because it was ordered by
a physician and not agreed to in consultation with the resident,
was also cited as a problem that led to confrontations between direct
care staff and residents.
Cognitive and Communication Deficits
Cognitively impaired residents and those who had difficulty
communicating were perceived by all to be more at risk for abuse
and neglect than more capable residents. While there may be no intent
to cause abuse, the lack of communication could result in abuse
and neglect as staff are unaware of what the resident actually wants.
"People who can't speak, can't let us know," said one
staff member.
Staff stressed the need to communicate by other means,
or to perceive what the resident wanted through careful observation.
It was seen to be vital that staff take the time to understand a
resident's wishes. The lack of time to do so and the use of part-time
help unfamiliar with the resident were seen by staff as factors
that might lead to abuse and neglect.
When Home
Is Not a Home — Abuse and Neglect in Long-Term Care
Despite the importance of spending time to become aware of a resident's
individual needs, staff across Canada indicated they were hard-pressed
to find time to spend with residents. Extra time spent with residents
who cannot easily communicate their needs resulted in less time
for others, leading to situations of resentment and frustration
among residents waiting for a care aide or nurse.
When Home Is Not a Home — Abuse and Neglect
in Long-Term Care
Section 3
Conclusion
The purpose of the APL projects was to explore the
meaning of abuse and neglect, primarily from the perspective of
residents living in Canadian LTC facilities, and to explore all
practical ways of both stopping and preventing abuse and neglect.
From a resident's perspective, abuse and neglect that
occur most frequently involve day-to-day interactions: a word, a
gesture or a lack of action. It stems from having to rely on others
to meet basic needs. And when those needs are unmet regardless of
the reason the resident feels neglected.
Abuse and neglect are also perceived as the result
of being devalued, of having to submerge personal lifelong habits
or possessions to meet inflexible regulatory guidelines within which
staff and facilities operate. It is the end result of understaffing,
of the use of unskilled personnel and of patronizing or negative
attitudes by all concerned.
Because of the complexity of what is perceived as
abuse or neglect, and our inability to protect against unforeseen
intentional criminal acts, it is probably impossible to obtain a
totally abuse-free environment for anyone. Nevertheless, it is imperative
that we strive to make abuse and neglect "zero-tolerated"
occurrences. To do so requires active, ongoing interaction and communication
among residents, staff, families, volunteers and the community at
large, as we are all part of the problem as well as the solution.
It is our belief that the solution to abuse and neglect
of seniors residing in LTC lies in a focus on the residents themselves.
This is not meant to diminish the fact that abuse and neglect can
happen to anyone. It can be perpetrated by residents themselves,
families, front-line staff and administrators, volunteers and others.
Moreover, it can often be reciprocal for many reasons, such as simple
misunderstandings. Residents themselves reported that abuse can
arise from the aggressive actions of residents toward staff.
The goal of this monograph is to focus on improving
the life of older adults in LTC by approaching the problem of abuse
and neglect from their perspective. By doing so, through effective
and sensitive policies and procedures, effective education and training
programs, and the fostering of a respectful and supportive environment,
we will move toward the development of caring environments for all
for those who reside, work or visit a LTC facility.
When Home
Is Not a Home — Abuse and Neglect in Long-Term Care
Bibliography
Beaulieu, M. & Bélanger, L. (1995). Intervention
in long term care institutions with respect to elder mistreatment.
In MacLean, M. (ed.), Abuse and Neglect of Older Canadians: Strategies
for Change. Toronto: Thompson Educational Publishing Inc., 27_37.
Bélanger, L. (1981). The Types of Violence
the Elderly Are Victims Of: Results of a Survey Done with Personnel
Working with the Elderly. Presented at the 3rd Annual
Scientific Meeting of the Gerontological Society of America, Toronto,
Canada.
Bélanger, A. & Dumas, J. (1997). Report
on the Demographic Situation in Canada 1997. Effects on the Social
Environment of Elderly Persons on Their Socio-economic Condition.
Ottawa: Statistics Canada, Catalogue no. 91-209-XPE.
Kozak, J.F, Elmslie, T. & Verdon, J. (1985). Prevalence
and incidence of abuse and neglect: National and international perspective.
In MacLean, M. (ed.), Abuse and Neglect of Older Canadians: Strategies
for Change. Toronto: Thompson Educational Publishing Inc., 175_190.
MacLean, M. (ed.) (1995). Abuse and Neglect of
Older Canadians: Strategies for Change. Toronto: Thompson Educational
Publishing Inc.
Mental Health Division, Health Canada (1994). Abuse
and Neglect of Older Adults in Institutional Settings: An Annotated
Bibliography. Ottawa: Minister of Supply and Services Canada.
Ontario Nursing Association College (1993). Report
on Abuse of the Elderly. Toronto.
Pillemer, K. & Moore, D.W. (1989). Abuse of patients
in nursing homes: Findings from a survey of staff. Gerontologist,
29(3), 414_320.
Shell, D.J. (1982). Protection of the Elderly:
A Study of Elder Abuse. Report of the Manitoba Council on Aging.
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Adults in Institutional Settings. Ottawa: Mental Health Division,
Health Services Directorate, Health Canada.
When Home
Is Not a Home — Abuse and Neglect in Long-Term Care
Appendix A
Structure of APL
The two Abuse Prevention in Long-Term Care projects
were funded through the following Health Canada agencies:
Abuse Prevention in Long-Term Care Project
funded through New Horizons — Partners in Aging Program, Health
Canada
Abuse Prevention in Long-Term Care Train-the-Trainers
Project funded through Population Health Fund, Health Canada
The coordinating sites for the project were:
Central Site
Research Department
Sisters of Charity of Ottawa Health Service Inc.
43 Bruyère Street
Ottawa, Ontario
K1N 5C8
Regional Sites
British Columbia St. Vincents' Hospitals, Vancouver
Manitoba Riverview Health Centre, Winnipeg
Quebec Regroupement des Trois Rives, Vaudreuil
Newfoundland Hoyles-Escasoni Complex, St. John's
Principal Investigator
Jean Kozak
National Project Coordinator
Teresa Lukawiecki
Research Assistant
David Dalle
When Home
Is Not a Home — Abuse and Neglect in Long-Term Care
Site Coordinators/Trainers
British Columbia Pearl McKenzie, Jacqueline Senning
Manitoba Elizabeth McKean
Ontario Teresa Lukawiecki
Quebec Carole Deschamps, Jocelyne Marion
Newfoundland Theckla Lundin
National Steering Committee:
The National Steering Committee, which oversaw the
projects, consisted of the following people:
Marie Beaulieu Elliot Paus Jennsen Jacqueline Senning
Lise Bélanger Jean Kozak Joan Simpson
Joan Bell Kirby Kranabetter Michael Stones
Elizabeth Boustcha Teresa Lukawiecki Arthur Sullivan
Thérèse Darche Theckla Lundin Judith
Wahl
Carole Deschamps Ellen McDowell Rosemary Williams
Irene Ens Ellizabeth McKean Ruth Williams
Kathleen Haley Pearl McKenzie Lill Ziegler
Joan Harding Leone Perron
Cora Hinds Randy Romain
Site Coordinators
Carole Deschamps, Teresa Lukawiecki, Theckla Lundin,
Jocelyne Marion,
Elizabeth McKean and Pearl McKenzie.
Coordinating Site Project Leaders
British Columbia St. Vincents' Hospitals, Vancouver,
Jacqueline Senning
Manitoba Riverview Health Centre, Winnipeg, Elizabeth
Boustcha
Ontario Sisters of Charity of Ottawa Health Services,
Ottawa, Jean Kozak
Quebec Regroupement des Trois Rives, Vaudreuil, Lise
Bélisle
Newfoundland Hoyles-Escasoni Complex, St. John's,
Anne Morrison/Pat Amos
Host Facilities
We would like to thank the 40 facilities across the
country that generously hosted the training workshops, contributing
to the success of the train-the-trainer workshops.
When Home Is Not a Home — Abuse and Neglect
in Long-Term Care
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