Abuse in Nursing Homes

Ombudsmen routinely respond and verify incidents of abuse and neglect. Incidents are verified through resident and family interviews, eyewitness accounts, review of medical charts and photographs of the injured resident. If there is consent from the resident, the incident is discussed with the nursing home administrative staff, and it is reported to the state regulatory body (Georgia Department of Human Resources, Office of Regulatory Services). In our experience, the regulatory process does not adequately respond to the reports of abuse we forward to it.

Sometimes an incident is not investigated for weeks and not documented by a written report for months. Often, by the time a state investigator interviews a victim of abuse, the injuries have healed and the resident may have forgotten the incident, particularly if there is memory loss or some dementia. Investigators then feel they have insufficient proof to write up the home for a deficiency. In addition, the state's actions are very limited even when deficiencies are shown.

This study examines the plight of frail, vulnerable nursing home residents who are susceptible to being victimized twice by a health care system designed to protect them and provide watchful oversight of their health, care and well being. First, they are subjected to the possibility of being neglected or abused in the institutional nursing home setting. Residents were interviewed about how they felt about abuse and neglect.

Many said the things they experienced or saw happening to other residents were not intentional; but rather the result of not enough nursing staff employed to do the work.

Hypothesis # 1: Nursing home residents are often ignored or dismissed as credible witnesses in cases of alleged abuse or neglect.

Second, oversight by federally mandated regulatory powers that are supposed to monitor and correct situations often fail to provide the relief residents, family members and advocates expect. Ombudsman-verified cases of abuse or neglect were referred to the state regulatory agency for investigation. These cases were tracked for the content and outcomes.

Hypothesis # 2: Regulatory investigations are not thorough and do not provide adequate relief for residents.

As advocates, we listen to the residents. Because long-term care ombudsmen do monthly visits, we have more consistent contact with nursing home residents and their families than any other outside group. This contact allows trusting relationships to develop between ombudsmen and residents. If a resident describes an action or statement that is perceived as harmful in nature and evidence supporting the incident is available, as advocates, we would place the incident somewhere on the neglect-abuse continuum. The following case was the result of the trust a resident had in the ombudsman. The ombudsman identified the case as gross neglect, i.e., a condition so severe that it causes harm. State regulators did not recognize that something deleterious had occurred.

(1) The resident council president approached the ombudsman during a routine visit to a nursing home. She told the ombudsman there were some upset family members who needed her help. The ombudsman found the three daughters in their mother's room. One month earlier, the mother decided to transfer to this facility from another one to be closer to her family. The ombudsman observed that the resident could not sit up and she did not recognize her daughters. Earlier, the daughters stated that they requested she be sent to the hospital, but nursing home staff told them there really wasn't a medical reason to send her. After a discussion with the ombudsman, facility staff arranged for transport to the hospital. She was admitted and hospital records indicated that this diabetic resident was malnourished and dehydrated. The nursing home denied that any weight loss had occurred during her one-month stay. Staff said the calibration on their scale was faulty during the time she was admitted. The ombudsman called the first nursing home and obtained her weight on the day she was discharged. This figure, compared to the hospital weight at admission, indicated a 20-pound weight loss in one month. The case was referred to the Office of Regulatory Services (ORS). According to that agency's written report, an investigator visited the facility. Neither the hospital nor the first nursing home was contacted. The report indicates that family members were interviewed. The daughters deny that they were contacted by ORS regarding the incident. The resident was not interviewed. No ORS citations were issued.

(2) In the next example, a resident's care was grossly neglected. The resident was sent to the hospital from a nursing home for wound care on a pressure sore. The hospital dressed the wound and sent the resident back to the nursing home with instructions on when to change the dressing and how to care for the wound. Several days later, family members, not nursing home staff, noticed an unpleasant odor and seepage coming from the wound. The family requested that the resident return to the hospital. At the hospital, staff recognized the bandaging as that which had been applied at the hospital. When it was removed, insects crawled and flew out of the wound. The incident was reported to ORS by the hospital social worker. The ORS investigation report indicated that no deficiencies were cited and that no flies were observed in the "room." (wound)

These examples are two of many we have gathered that seem to demonstrate an institutionalized culture which accepts reduced expectations for quality of life and quality of care as inevitable. They also point to the concern of short staffing; an issue 81% of the residents interviewed saw as a barrier to good care. In the first case, the resident's weight had not been monitored appropriately. In the second case, no one changed the bandages on a pressure sore as instructed by the hospital. As the review of literature will show, short staffing has been a problem in nursing homes for at least 20 years. In Georgia, a bill that would require more nursing care per resident has never made it out of legislative committee. Instead, a resolution to create a joint House and Senate study committee on staffing was approved during this year's session. Advocates see this as the beginning of a dialogue that has been needed for a long time. The Nursing Home Association representative worries that the committee could portray the industry in a less than positive manner. "If it's like many study committees, people will testify their horror stories and we won't get anything done," said Fred Watson, Georgia Nursing Home Association president in "The Savannah Morning News". These cases are not isolated nor are they dismissible as horror stories. They are part and parcel of nursing home life and that is not acceptable.

Addendum: The definitions for actions considered to be neglect and actions considered to be abuse can mean different things. For purposes of this study, please refer to Appendix A for an explanation of these terms. Debate exists between advocates for nursing home residents, such as long term care ombudsmen, and others involved in the provision of services about the usage and definition of these terms. Is an action of oversight neglect? Is a repetitive pattern of seemingly innocuous oversights more serious? Who determines what threshold must be crossed in order for an incident to be labeled abuse? What about the residents? During the course of this study, residents were asked to define actions of abuse and neglect. Their views ought to be taken into consideration. See Appendix C.

Literature Review

Recently, the quality of long-term care has come under serious scrutiny by researchers, legislators and the public. According to Shaw, the current quantitative literature provides only snapshot views of institutional elder abuse. Further qualitative study would offer a broader conceptual view of institutional abuse and provide the foundation for further quantitative studies.

One recurring issue is little attention has been given to the residents' perceptions of quality of life. Subsequently, what they identify as neglectful or abusive treatment has not been widely used. One study attempted to directly elicit residents' perceptions of what affects quality of life. Residents were asked to identify quality indicators of life and care in a nursing home. Residents indicated that staff who were well trained and had positive attitudes were most important. Another study looked at quality of life in the institution from multiple perspectives and domains. However, at one site nursing home staff members were allowed to screen out any residents whom they felt would not be appropriate for interviewing. Residents in this study suggested more staff and better staff as a means of improved care. This study will show what residents define as abusive and neglectful treatment.

Griffin and Aiken found that elder abuse in institutional settings remained largely invisible because institutions for elders are mainly all female spaces where ageism and sexism converge. Clients and workers are economically and socially disadvantaged. There is little professional status attached to working with elders because those who do so are women and women's work is habitually devalued and is poorly paid. Nursing home structural factors such as staffing levels, salary structure, sick leave policies, staff supervision and personal circumstances such as family demands and substance use influence staff members' abilities to care for residents. "Most people can't live on a CNA's salary and support a family." In 1998, the median hourly wage for Certified Nursing Assistants was $7.44. The median wage for non-certified CNA's was $6.58. Turnover rates for these positions ranged from 106% in 1995 to 93% in 1997. In addition, benefits, including health insurance, are not usually available for these positions. One nurse displayed how little she valued the aides when she told one that she came a dime a dozen while the good ones come a dollar a dozen. Aides provide between seventy and ninety percent of the hands-on care for residents but they are seen as expendable by management. Being overworked, underpaid and so devalued by the employer seems to set up a situation where mistreatment of those in need of care is likely to occur.

In a new report, based on eight years of research, federal officials have concluded that most nursing homes are understaffed to the point that residents may be endangered. The report says that understaffing has contributed to life threatening conditions that probably could have been prevented if the homes had more employees. State inspectors are supposed to make unannounced visits to each nursing home at least once a year to assess compliance with federal standards. During these visits, selected residents are given the opportunity to meet privately with the surveyors. But residents "report a fear of retaliation from staff or other residents "if they express concerns about staff. Employees "have also voiced the fear of losing their jobs if they discuss issues with the survey team."

Two decades of studies have identified poor quality of care provided by some nursing homes. Researchers found many of the nations nursing facilities were operating at a substandard level in that they failed to meet minimum requirements considered to affect residents' health and safety. Ineffective supervision can be a factor contributing to poor care. Little is known about how nursing supervisors allocate their time in nursing homes. One of the many problems identified was the low nurse staffing level. For example, Kayser-Jones found that because of inadequate staffing and supervision some residents got little or no food. "Trays were taken into rooms, but no one fed their occupants. Residents couldn't complain because they were cognitively impaired."

Abusive actions occur in nursing homes with some frequency. The widespread existence of maltreatment suggests that those who make recommendations for improving the quality of long-term care must recognize it and must start listening to what the residents say is happening to them. It is no longer possible to ignore maltreatment of these residents as part of the effort to bring about solutions to the problem.

Efforts have been focused on discovering the reasons for substandard and impersonal quality of care. Advocates for the elderly have been concerned about quality of care for years and elder abuse appeared in the literature over twenty years ago. A U.S. General Accounting Office audit in 1998 revealed wide spread neglect of nursing home residents. State surveyors expressed frustration about the inadequacies of the enforcement process. One state surveyor remarked: "Once we write down violations, the nursing homes complain and our superiors keep us from going back or else they dismiss our citations." A surveyor in Georgia observed an aide examining the diapers of three bed-bound residents without changing her gloves. She cited the incident as a violation. The Atlanta ombudsman office received a copy of the survey. The citation was marked out and hand written next to it was the following comment: "According to (name withheld) you don't have to wash your hands unless you touch something nasty!!!" In a recent report, the Missouri State Auditor criticized the state's monitoring of nursing homes and handling of complaints. "Complaints are not investigated in a timely manner and sanctions were ineffective in preventing identical deficiencies. The same facilities were cited for numerous deficiencies, year after year." Harrington found the California Licensing and Certification program, responsible for regulating nursing homes, completely ineffective.

Enforcement of the requirements of the 1987 Nursing Home Reform law has been controversial according to Edelman. Since the new federal enforcement rules became effective, enforcement has become increasingly limited. Five states, including Georgia, were selected for review of the federal enforcement system. The report concludes that when states implemented the new system, enforcement of HCFA regulations came to a virtual standstill.

Complaint investigations by federal and state officials fare no better. A Government Accounting Office study has found that federal and state practices for investigating complaints about nursing home care are not as effective as they should be. The GAO report was the result of the examination of the process for handling complaints in 14 states. Among the problems were:

Complaints alleging harm have gone uninvestigated for weeks or months in many states. Although the federal government finances more than 70% of complaint investigation, the Health Care Financing Administration (HCFA) plays a minimal role in providing states with direction and oversight regarding these investigations. HCFA has left it up to the states to decide which complaints put residents in immediate jeopardy and should be investigated promptly.

Recommendations coming from this report include:

Goal: To produce a study which contains quantifiable evidence on the abuse and neglect of Atlanta nursing home residents and which measures the timeliness and thoroughness of the state regulatory response.

Goal: To produce a study on nursing home abuse and neglect that can be used to:

Goal: To develop a methodology to investigate abuse and neglect of nursing home residents which can be replicated by other local ombudsman programs.

Objective: To collect data on residents' perspectives on abuse and neglect through extensive interviews with residents who are directly and indirectly affected.

Objective: To identify barriers that impede access to reporting incidents to the regulatory system.

Objective: To monitor the response to incidents of suspected abuse and neglect by the state regulatory system.

This study explored abuse and neglect in nursing homes as observed and interpreted by residents as well as documented evidence by long-term care ombudsmen. A literature review and ombudsman knowledge suggest residents are overlooked or dismissed as credible sources and witnesses. The subject was approached in two ways. First, local staff ombudsmen targeted ten problem facilities, identified alert nursing home residents and requested their permission to interview them about abuse and neglect that they had experienced or directly witnessed happening to other residents while living in the facility. This pool expanded to include facilities in the metropolitan area where ombudsmen identified residents who were willing to participate. Interviews with residents were conducted using quantitative and qualitative questions using the grounded theory method. Second, the community ombudsmen office tracked cases of abuse and neglect. These cases were investigated by ombudsmen and verified. The same cases were subsequently referred to the state long-term care regulatory agency. Data gathered on these cases suggest that regulatory investigations are inadequate. Among other things, regulatory investigative reports rarely included interviews with residents, family members, direct caregivers or professionals outside the nursing home.

The Atlanta Long Term Care Ombudsman Program serves 10 counties in the metropolitan area. They are: Cherokee, Clayton, Cobb, DeKalb, Douglas, Fayette, Fulton, Gwinnett, Henry and Rockdale.

Karen Boyles: Program Manager

Linda Brazeau: Team Leader for Interviews with Residents

Staff Interviewers: Karen Boyles, Joey Carpenter, Monica Graham-Clark, Roberta Collins, Laura Formby, Valorie Williams, Carolyn Young

Volunteer Interviewers: Cathie Baptie, RN, Dr. David Sensor, Catherine Whittington, Esq.

Gypsie Winslade: Team Leader for Case Tracking at the State Regulatory Level

Cases were referred by each staff member, i.e. all those listed above and Jennie Deese, Cheryl Harris and Carolyn Young.

Funds were provided by a grant from the National Citizens' Coalition for Nursing Home Reform.

November 1, 1999 - September 30, 2000.

Ten nursing homes were selected on criteria identified by community ombudsmen as potential indicators of problems as the beginning base for this part of the project. We looked at:

After several weeks of interviewing at the targeted facilities, interviewers spoke with almost all the identified residents. The process was opened to include any resident in any facility in our region who indicated a willingness to participate. Residents in twenty-three of eighty-one facilities in our region were interviewed.

Ombudsmen identified residents who agreed to be interviewed about abuse and neglect they had experienced or directly witnessed happening to other residents. Almost all those approached agreed to be interviewed. Those who declined told the ombudsmen they were afraid of retaliation if they participated. The names of the residents who agreed to participate were given to the interview team leader who scheduled the interviews.

We used the criteria for identifying interviewable residents from the HCFA Survey Procedures for Long Term Care Facilities:

We also checked Section B, Coding on Cognition, contained in the Minimum Data Set (MDS) in a random sample of the selected residents. However, our research has uncovered inaccuracies in the MDS information. For example, a resident was deemed not interviewable by the administrator because he made poor decisions and refused medications. The ombudsman spoke to the resident who said he was an insulin-dependent diabetic and his blood sugar level was monitored in the morning and in the evening. The morning check often reveals that his blood sugar level does not require the injection when the nursing home staff attempts to administer the injection and he refuses it at that time. This resident was not included in the group interview during the ORS survey.

Even though these tools must be used to provide a benchmark for determining the reliability of the cognitive state of the interviewees, they should not be used to deny the validity of a complaint of abuse or neglect from anyone.

A ninety year-old resident told one interviewer that a staff person called her a bitch but she couldn't recall the staff person's name. The interviewer noticed that most staff members were not wearing nametags and on some who were wearing them, the tags were on upside down.

A resident diagnosed with dementia claimed someone was trying to kill her. She had bruises on her face and arms. A state investigation report revealed that alert and oriented residents identified a staff member as being abusive to them and to the resident with the bruises, and therefore validated the complaint.

A statement of purpose and confidentiality was read to each resident before the interview began. See Appendix D. If the resident agreed to proceed, it was signed and dated by the resident. These agreements were stored in a separate file from the actual interviews. All identifying information on the interview was numerically coded to protect the residents' identity. The interview structure was based on Ramsey-Klawsnik's model for interviewing cognitively impaired victims. The interview consisted of closed and open-ended questions that touched not only on abuse and neglect but other common issues residents often bring to the ombudsman's attention, e.g. food quality and staffing levels. Interviews were conducted in private in the residents' rooms. Interviewers reported that nursing home staff members interrupted on several occasions.

All interviewers were staff or volunteer ombudsmen with the local Atlanta program. The Project Manager trained interviewers on effective and appropriate interview techniques.

B. Case Tracking

All staff ombudsmen participated in this section of the project and complaints were taken and referred from any facility in the metropolitan area. Only complaints involving an abusive or neglectful situation as defined by The Older Americans Act and included in the Georgia State Ombudsman Manual of Policies and Procedures, Long Term Care Ombudsman Reporting System were included in this study.

Upon receiving and defining a complaint, the staff ombudsman began an investigation by going unannounced to the facility and visiting with the resident for whom the complaint was lodged. Typically, the ombudsman interviewed the resident to obtain as much factual information concerning the alleged incident as possible. If the resident wasn't able to be interviewed, the ombudsman sought information from family members, facility staff and other information sources, e.g. hospital staff, police reports and others who may have information concerning the complaint. If the ombudsman obtained information verifying the incident and it involved a care or safety issue, the ombudsman referred the complaint to the state regulatory agency for further investigation. As the referring complainant to the state regulatory agency, the ombudsman received a copy of the state's investigation report and the results of their findings.

Resident Interviews

Eighty residents in 23 nursing homes were interviewed. Respondents ranged in age from 37 to 95. Forty-one percent were African American and 59% were Caucasian. Seventy percent were female and 30% were male. Length of stay at the facility ranged from 2 months to 20 years. Quantitative responses were tallied on a simple spreadsheet. Three ombudsmen and a summer intern reviewed qualitative responses. During this process, patterns of similar responses emerged. These qualitative responses were condensed into categories. Following is an example of the sequence of quantitative and qualitative questions and their corresponding responses.

Question 39 (Quantitative)

Question 40a (Quantitative)

Question 40b (Qualitative)

Question 41 (Qualitative)

Question 42 (Qualitative)

Listed below are some of the verbatim responses that were grouped into the categories for this sequence.

Forty-four percent said they had been abused. Thirty-eight percent said they had witnessed other residents being abused.

When asked if they told anyone about the incidents, the majority said they didn't because it wouldn't do any good and they were afraid of retaliation.

Ninety-five percent of the respondents said they have experienced or witnessed others being neglected.

Forty-eight percent of the respondents said they had been handled in a rough manner and 44% witnessed others being handled roughly.

Residents were asked about other aspects of life in a nursing home during the interviews.

Eighty-one percent said there aren't enough staff people to meet the needs of the residents.

Seventy percent said there aren't enough staff to help at mealtimes.

Seventy-seven percent said residents who need assistance with eating don't get enough to eat or drink.

Sixty-four percent said they don't like the food.

Fifty-four percent said it isn't served on time.

Fifty-six percent said the temperatures of the items on the menu were incorrect, i.e., hot foods weren't hot, cold foods weren't cold.

Sixty-five percent said they do it themselves.

Fifty percent said they had not seen a dentist since coming to the facility.

Medication Error

Twenty-one percent said they had been given the wrong medications but 38% said the error was corrected when they pointed it out to the nurse.

Fourteen percent said they had actually ingested the wrong medication.

Most responses fell between 1-3 times a week.

Forty-four percent said they did not need assistance with bathing.

Respondents Opinion of the Administrators' Effectiveness

Nineteen percent said they thought the administrator was doing a good job.

Fifty-eight percent said the administrator's ability to run the nursing home was poor or needs improvement.

If you could do one thing to change this nursing home, what would it be?

Top Three Responses:

Interviewers' Comments

Seventy ombudsman-verified cases of abuse and neglect cases were referred to the Office of Regulatory Services during the course of this study. Three percent were verified and an appropriate deficiency citation was given to the nursing home. In some cases, the investigators wrote deficiencies because the nursing home did not follow proper procedures but the citations did not address the specific issue(s) that had been referred.

None of the following cases were verified and no deficiencies were written.

Clearly, our initial research hypothesis that nursing home residents are ignored or summarily dismissed as credible witnesses and victims of mistreatment has been proven. The sense of disenfranchisement, vulnerability and helplessness among the residents was pervasive throughout our findings. Repeatedly, study subjects told our interviewers, "It won't do any good," or "Nothing would happen," if they reported mistreatment. In fact, they were afraid reporting may have produced additional harm and mistreatment in the form of retaliation. Despite this, many of our study participants agreed to answer our questions because they do not want others to experience what they have had to endure.

Overwhelmingly, the residents reported that poor services and dangerous environments were directly related to lack of nursing home staff. Basic needs such as assistance with going to the bathroom, eating meals and getting dressed are routinely lacking. As the literature review indicated, low pay and the stigma of working in a nursing home plays a role in the constant turnover in this predominately female industry. Most industries determine the number of people required to perform tasks in order to produce a quality good or service. These residents, as consumers, are saying the service is not good and one of the reasons is the lack of staff. Billions of federal tax dollars subsidize the nursing home industry yet the federal government sets no minimum staff-to-resident ratios. A recent HCFA study concludes that there may be "critical ratios of nurses to residents below which residents are at substantially increased risk of quality problems." Guidance to state surveyors on staffing issues and requirements is vague and can be subjectively interpreted. The citation, F353-insufficient staff, was written only one time during this project.

The other result discovered by our research is that failure to follow mandated protocols was the most common deficiency cited in the seventy cases referred on to the Office of Regulatory Services. Even if an injury occurred as the direct result of an action charted in the resident's file or admitted by the nursing home, the abuse citation was not written. It was not written for any of the cases referred during this project. According to reports of investigation conducted by ORS surveyors, they routinely interviewed nursing home staff. In the few cases where residents were interviewed, the information obtained from these interviews was dismissed. Their reports indicate that they did not routinely interview or obtain records from other agency staff that might substantiate the complaint, e.g., lab reports, hospital emergency room reports, hospital social worker reports, police reports, autopsy reports. Nor did they routinely contact the ombudsmen for information or consultation.

An ORS surveyor told one of our ombudsmen that her complaint about large numbers of flies in the building was "piddling," because "all nursing homes had flies." In a follow up visit concerning this complaint, the administrator of the facility told the ombudsman that the flies were not coming from the outside but from the corpse of a dead rat somewhere in the building that staff could not locate. This surveyor apparently was not aware that the facility had been cited in the past by her colleagues for flies and for the administrator's inappropriate use of rat poison. ORS documentation of the facility's sanitation problem could have produced new procedures for the nursing home and a healthier environment for the residents. This issue is hardly "piddling."

This study has shown that:

By taking advantage of other available resources - residents, family members, ombudsmen and other agency staff - ORS surveyors could improve the thoroughness and reliability of these investigations and thereby improve and protect the quality of life for all nursing home residents.

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Appendix A Definitions

During several discussions, ombudsmen have raised the question of how to correctly identify instances of abuse and neglect of nursing home residents. Abuse is the easier problem to identify because the results are usually obvious; e.g., there are bruises or maybe an eyewitness. Neglect is not as apparent and often not identified correctly. For purposes of this project, the following definitions and examples should be considered.

Abuse: Causing a harmful act by willful intent.

Physical Abuse: Infliction of physical harm or injury caused by willful intent. This includes: hitting, slapping, pushing, pinching, burning, sexual assault, rough handling, striking with an object and the inappropriate use of restraints.

Psychological Abuse: Infliction of emotional or mental harm by willful intent. This includes: intentional isolation, yelling and cursing at the victim and berating the person.

Neglect: To give little attention or respect to, thus causing gradual increase in the potential for harm.

Four Examples of Ways to Cause Neglect

Pass over without giving due attention.
Example: A meal not served according to a resident's needs or wishes.
Potential for harm: Weight loss, dehydration

Voluntary inattention
Example: A resident's repeated requests to go to the bathroom unheeded.
Potential for harm: Urinary tract infection, skin breakdown, incontinence

Failure to regard something obvious.
Example: A resident sitting in the hallway in soiled clothing.
Potential for harm: Infection

Disregard through haste or lack of care.
Example: Medication error.
Potential for harm: Drug over dose, deterioration of chronic condition

Accidents
Improper handling
Request for assistance/Call light not answered timely
Failure to follow care plan or doctors' orders
Contracture
Medication error
Personal/oral hygiene neglected
Pressure sores
Symptoms unattended/Change in condition not noticed
Toileting needs not met
Inappropriate wandering
Unexplained injuries
Inadequate supervision/ short staffing
Inappropriate or lack of care re tubes (gastric, catheter)

Physical harm
Sexual harm
Verbal harm
Punishment
Seclusion
Restraints
Gross neglect
A condition of neglect so severe that it causes harm

Appendix B Oral Interview Instructions

This 11-month project designed to study abuse and neglect of nursing home residents consists of two parts. One part involves tracking cases of abuse and neglect referred by ombudsmen and sometimes family members to the state regulatory agency, Department of Human Resources, Office of Regulatory Services, (ORS). The second part of the project consists of oral interviews with residents. Residents often tell us that they feel left out when the facility or the state regulators conduct investigations of alleged abuse and neglect. Our experience has shown that this may very well be true.

We have designed an interview tool that will help us determine if residents report concerns regarding abuse and neglect to appropriate authorities and what results, if any, they receive. We will also try to determine the reason if there is a lack of reporting and to identify the barriers that exist regarding residents' access to the system.

The ombudsman assigned to the selected facilities will identify alert and oriented residents who have indicated that they are willing to be interviewed. The ombudsman will accompany the interviewer to the facility and introduced the resident to the interviewer. Based on the level of comfort indicated by the resident, the ombudsman may or may not be present during the interview. The interview should be conducted in private in a place comfortable to the resident and last no more than one hour.

The interviews will be conducted as uniformly as possible. The interview tool contains closed and open - ended questions. Some of the open- ended questions are marked with an asterisk (*). You may need to prompt the interviewee on these questions. According to one of our advisors on this project, Dr. Mary Ball, uniform prompting is acceptable during oral interviews. This will be discussed in detail during our training.

Attached to these instructions are abuse and neglect definitions and categories of abuse and neglect as identified by the ombudsman program. They are intended for use as reference tools during the interview.

Talking about abuse and neglect can be very stressful for the interviewee. If at any time, the resident indicates that he/she does not want to continue, gently end the interview immediately. Notify the ombudsman of the results so that he/she can follow-up with the resident.

If a resident tells you about a situation where abuse or neglect occurred and the ombudsman who is assigned to the facility is not aware of the incident, ask the resident if he/she would like to talk with the ombudsman about it. If the resident declines, ask if you can tell the ombudsman about it. If the resident declines your offer to speak to the ombudsman, reassure the resident that you know it is difficult to talk about these things and ask the resident if you can come back and just visit with them another time and continue the interview.

The completed interviews should be returned to Linda Brazeau as soon as possible. You can give them to the ombudsman or mail them to her at 246 Sycamore Street, Suite 248, Decatur, GA 30030.

Appendix C Respondents Definition of Abuse

Hitting
Hitting
Hitting
Hitting
Hitting
Hitting
Hitting
Hitting
Hitting
Hitting
Hitting
They hit you
Hitting, pushing
Slap/hit someone
Slapping and hitting
Slapping
Minor slapping but saw one resident was black and blue, family saw hand marks from slapping
Grabbing
Snatching - grabbing
Rough handling
Rough handling
Rough handling
Rough handling, not giving help
Handling me rough
Handles you roughly especially when dressing
When they handle you roughly you get black and blue
When they throw my roommate in bed
Throwing resident
Throwing resident
Pulling on arms
Treated bad in bed
Jerking
Jerk you around
Handling you wrong, jerking you around
Handling you wrong, jerking you around
Not answering call light
Putting the call light where I couldn't reach it
To cause bodily injury to a person
When they take me to the bathroom put me in wrong position I get cuts and scratches
Hurting someone
If they hurt you bodily
Not turning me
To inflict bodily pain in another person
Residents fight and no one stops them. DON & Adm. tells her not to talk to state
Doesn't like this question
Doesn't like the question
They don't want to put deodorant on you
Like not wanting to send him to a hospital of his choosing
Mistreating somebody who can't talk
Unexplained bruises
Manhandling

Is what they say to you that is ugly not nice
Cursing
Cursing
Curse
Cursing or acting foolish
Curse or say something like calling me a name
Saying bad words or fussing at you
"Go to hell"
"You need to walk to the bathroom"
Coming real loud, cursing
Talking rough
Mean
Saying threatening remarks
Talking ugly
Speaking ugly
Loud voices
Talking to someone in an inappropriate manner
Talking mean
Yell/scream or talk rudely to a person
Being called stupid
To yell or curse at someone
Rough talking
Talking in harsh tones
Talking smart
To yell or say things to an individual in an ugly way which are aimed at hurting/degrading the person
Saying mean things
Say mean things
I've had very little of that
Cursed by CNA
Like what I went through with the CNA saying she don't have to give me a shower
Talk to others about you in a bad way
CNA's cuss out
When they say something ugly to you
Yelling
Getting hateful with you
Any kind of name calling-use adjective (negative) likes his privacy-don't leave him uncovered -also walk right in
You're too heavy
Talking mean
Say bad words
Anything said which should not be said
Aides yelling at residents
I don't know of any sexual abuse mental abuse - a lot of that going on ex.
A CNA coming in after call light turns off say be back but never come back - never asks what's wrong -most important to get light turned off and leave

Oral sex without permission
Resident said she had inappropriate remarks made by staff, "you mean you have only had one man?"
Forcing yourself on another person
Making sexual remarks in a sexual way
Someone trying to have you
A male a would go around checking the women to see if they were dry
Self explanatory, touching without permission
Touch inappropriately or do inappropriate acts to person's privates
Being touched in an inappropriate way
To rape or fondle someone inappropriately
Touching in places
Inappropriate touching
Messing with me/ male to do care
Inappropriate touching of certain parts of the body, suggestive remarks or actual rape
I don't think it happens here
Touching when you don't want it done
Touch your body
I don't think I've had any of that - one person makes me uncomfortable. You don't get too friendly with him - he's never done anything no one has come in our room
Don't know
No rumors of sexual abuse
Touch you in wrong way
I'm too old for that

1. Does the facility have a family council?

If yes, how active is it? Meets rarely - Meets occasionally - Meets monthly

2.Does the facility have a resident council?

If yes, how active is it?

Meets only when the Social Worker sets the time and date - meets monthly with some assistance from staff - meets monthly with little or no help from staff.

3. What is the rate of incontinence at this facility?

4. What is the rate of pressure sores at this facility?

5. Briefly describe your working relationship and communication with the Administrator, Director of Nursing, Social Worker.

Appendix E Resident Consent Form

As a nursing home resident, I have been asked to participate in a research project investigating abuse and neglect in nursing homes. The purpose of the research is to learn about these problems, to help prevent them and to understand how these problems are addressed when reported.

I understand that if I participate in this project, I agree to let the interviewer talk to me one time in the home. The interviewer will ask me some questions about my care and the care of other residents. If I become tired or want to stop the interview, I may do so at any time.

I understand that my name will not be used in any way after the interview is finished and no one connected with the nursing home has knowledge of my participation. No one outside the research project will know any of this information about me, the other residents or my facility. A report of general results from my interview and from interviews will be prepared for the organization supporting this project, The National Ombudsman Resource Center. At no time will the names of residents who were interviewed be used.

This project is under the direction of Karen Boyles, Coordinator of the Atlanta Ombudsman Program. The interviewer has offered to answer any questions I have about this project. If I have any other questions, I can call Karen Boyles at (404) 371-3800 or I can talk to the Ombudsman who visits this facility.

[Date -- Resident Signature]

We are doing a study on abuse and neglect of nursing home residents. We want to understand if things are overlooked or they fall through the cracks when an investigation of an alleged incident of abuse or neglect occurs. We want to know if residents get to have their say. Now is an opportunity for you to give your perspective. I will not reveal your name or anything you tell me to the administrator or anyone else associated with the nursing home. In addition, neither your name nor the name of this facility will be mentioned in our final report. Everything you tell me is confidential. We hope the information we gather will help to improve the quality of life for people living in nursing homes.

1. How long have you lived here?

2a. Do you know the administrator of this nursing home?

2b. Briefly, what is your opinion of the administrator's ability to run this home?

3a. Usually, how long does it take staff to answer your call light?
Less than 15 min.
15-30 min.
30-45 min.
1 hour
More than 1 hour

3b. Is there a working clock in the resident's room?

4. Do you need help to go to the bathroom?

5. If yes, usually, how long do you have to wait for help?
Less than 15 min.
15-30 min.
30-45 min.
1 hour
More than 1 hour

6. Do you ever hear other people calling for help?

7. If yes, how often?

8a. Does the same aide help you every day?

8b. If no, how often do they change?

9a. We are using the words abuse and neglect for this project. These words can have many different meanings. I am interested in what you would define as an action of neglect. Give me an example

9b. Do you think you have been neglected at this nursing home?

10a. Did you tell anyone?

10b. If yes, who did you tell? Aide - Nurse - Director of Nursing - Administrator - Family - Ombudsman - State person - Other

10c. Did you know you can tell the Ombudsman or call the state?

11. If yes, what happened as a result of your report?

13a. How often do you get a bath?

13b. Any comments on bathing?

14a. Has anybody ever handled you in a rough manner?

14b. If yes, what happened?

15a. Have you ever seen another resident handled in a rough manner?

15b. If yes, what happened?

16a. Did you tell anyone?

16b.If yes, who did you tell? Aide - Nurse - Director of Nursing - Administrator - Family - Ombudsman - State person - Other

17. If yes, what happened as a result of your report?

19. Do you like the food?

20a. If no, what don't you like?

20b. Is it served on time?

20c. Are the hot foods hot and the cold foods cold?

21. Do you think there are enough staff people helping at mealtimes?

22. If no, what do you think is the reason?

23a. Do you get enough to drink?

23b. How much do you drink on a daily basis?

24a. Do you think residents who need help with eating and drinking get enough water?

24b. If no, what do you think is the reason?

25a. Oral care can be brushing your teeth, cleaning your dentures or swabbing your mouth. Do you do your own oral care?

25b. If no, how often does a staff person do your oral care?

26. How often do you see a dentist?

27a. Have you ever been given the wrong medications?

27b. Describe what happened.

28a. Has anybody ever cursed at you or yelled at you or spoken to you in a way that made you feel bad at this nursing home?

28b.If yes, what happened?

29a. Did you tell anyone?

29b. If yes, who did you tell? Aide - Nurse - Director of Nursing - Administrator - Family - Ombudsman - State person - Other

30. What happened as a result of your report?

32a. What about other residents? Does it happen to them?

33. Now I want to talk about abuse. Again, it can have many different meanings. There are several types of actions that can be defined as abuse. There's physical abuse, sexual abuse and verbal abuse. In your mind, what would be an example of each.

34. Do you feel as if you have ever been abused by anyone at this nursing home?

35. If yes, can you tell me about it?

36a. Did you tell anyone?

36b. If yes, who did you tell? Aide - Nurse - Director of Nursing - Administrator - Family - Ombudsman - State person - Other

37. What happened as a result of your report?

39. Have you ever seen any of the other residents abused by anyone in this nursing home?

40a. Did you tell anyone?

40b. If yes, who did you tell? Aide - Nurse - Director of Nursing - Administrator - Family - Ombudsman - State person - Other

41.What happened as a result of your report?

43a. Do you think there are enough nursing staff people at this facility to meet the needs of the residents?

43b. If no, what are your thoughts on this?

44. Is there anything else you would like to tell me? Remember, everything you tell me is confidential.

45. If you could do one thing to change this nursing home, what would it be?

46. Is there any social activity you would like to have provided to you that you don't have now?

47. What is your favorite social activity sponsored by the nursing home?

(Find something to talk about with the resident for a few minutes that will end the interview on a positive note.)