There are no costs for participating in this study. Study participants will be awarded a $20.00 gift card for their participation. Participants who choose to withdraw from the study after data collection has begun will receive the $20.00 gift card.
How will you keep my information confidential?
The audio recordings will be kept in a locked file cabinet separate from the consent forms and transcribed data. All interview data will be transcribed onto an electronic file that will be
maintained on a password protected computer. This consent form with your name will be kept in a locked file cabinet separate from the transcribed information. When the study is reported names of the study participants and their employers will not be shared. All information obtained in this study is strictly confidential unless disclosure is required by law. You will not be asked to provide any confidential information about clients that you have cared for that would be a violation of the Health Information Portability and Accountability Act (HIPAA). Your information will only be identified with a pseudonym (code associated with your name) rather than your actual name. The audio recordings will be destroyed in 3 years, and the study data will be destroyed in five years. What if I want to leave the study?
withdraw, it will not affect you in any way. If you choose to withdraw, you may request that any of your data which has been collected be destroyed unless it is in a de-identifiable state.
What about new information/changes in the study?
If significant new information relating to the study becomes available which may relate to your willingness to continue to participate, this information will be provided to you.
Voluntary Consent by Participant:
By participating in the interview you are agreeing that you read, or it has been read to you, and you fully understand the contents of this document and are openly willing consent to take part in this study. All of your questions concerning this study have been answered. By participating in the interview you are agreeing that you are 18 years of age or older and are agreeing to
participate, or have the individual specified above as a participant participate, in this study described to you by Yvonne Johnson.
APPENDIX E
SELF-NEGLECT CODE BOOK DEFINITIONS
1. Definition
a) Definition as it relates to Personhood
What the nurse identifies as the overall picture of the individual that indicates self-neglect.
b) Definition as it relates to Environment
What the nurse identifies in the physical environment that indicates self- neglect.
2. Problem- Reasons for referral to home health services.
3. Action- Steps nurses take to validate what they are seeing, make decisions, and mobilize the resources needed to impact the situation.
4. Behaviors- Manner in which the self-neglecting individual interacts with other individuals.
5. Barriers- Anything that prevents the ability of the nurse to act or intervene or anything that prolongs self-neglecting behaviors.
6. Facilitators- Anything that speeds or makes easier the ability of the nurse to act or intervene.
7. Nurses Responses
a) How nurses rationalize their actions b) Nurses emotional response to Self-Neglect
APPENDIX F THEMES
Themes for Nurse Perceptions of Elder Self Neglect Global Categories Clusters Initial Raw Data
Armor: Perceived conduct used by self-neglecting individual to protect self
ARMOR
It’s my normal
just don’t see it as being odd or out of the ordinary
It has become their normal just a normal state of being that is their normal
normal life for them perfectly normal for them Control of
territory
Territorial I do see control
Viewed us as an invasion
It is control, independence and control felt kind of territorial
This is my home. If you don’t like it you can just get out.
Adamant that we not be in their home Emotion Belligerent
cuss me out
very angry and upset Withdrawn
Blasé
act like life is going on as usual.
Psychological Derivation (root): Psychological attributions for self-neglect behaviors PSYCHOLOGICAL
DERIVATION (ROOT)
Undiagnosed mental illness
No diagnosis of mental illness He wasn’t completely there
no doubt that he may be dealing with some undiagnosed mental illness
Global Categories Clusters Initial Raw Data
PSYCHOLOGICAL DERIVATION
(ROOT)
Depression view them as hopeless being hopeless
They’re so depressed they don’t care
something going on depression wise I think it’s more of a depression maybe some depression has started Dementia sometimes its dementia
A lot of these clients… in the beginning stages of Alzheimer’s
Related to mental or demented states
They have dementia but they can still answer those (questions from APS).
Seclusion: Actions that socially isolate clients who self-neglect
SECLUSION
Isolation by choice
His choice to live there
He didn’t want to go anywhere Hermit type
It’s their home and they do not want to leave there
They push people away They shut folks out
Wanted so much to be by herself Isolation by
others
Their children may have isolated or alienated them
Son not involved
Husband stays in the back room
sense of disgust and (family) need to get out of there
They’ve got excommunicated from family Isolation by
circumstances
His brother recently died.
lack of another significant individual family has usually moved away No … support system
No network of friends Lack of available caregiver
Global Categories Clusters Initial Raw Data
Nonconformity with Self-Care Conventions: Willfully failing to attend to self-care
NONCONFORMITY WITH SELF-CARE
CONVENTIONS
Medication Don’t care enough…to call in their meds No concerns for her medication
would not.…be compliant with her medication didn’t want to take his medicine period stopped taking it altogether
Refusing to take their medication Hygiene very disheveled, very unkempt.
Did not take care of her personal hygiene Don’t care about bathing
unkempt and dirty men wouldn’t be shaven No motivation getting a bath
Nutrition Neglected nutrition
don’t eat regular meals Poor nutrition
they are not eating
Environment Lived back in the woods in that shack Holes in the floor
not even running water roaches …everywhere Bugs in wounds
Dried food …piled up for days Dog feces and urine
grass is up to your knees House is absolutely filthy cobwebs … like out of a movie Hugely cluttered
Hoarder
Global Categories Clusters Initial Raw Data
Nursing Responses: Nurses reactions to self-neglect. These include both emotional responses and action responses.
NURSING RESPONSES
Emotional Responses
Horrific
Really, really bad That just broke my heart That just tore me up Shocked
If you don’t do something you go home feeling guilty
I felt like I left them in a lurch
Like a train wreck, you’re just watching it and waiting on it to happen
Action Responses- Independent
Therapeutic communication Establish a trusting relationship Establish a rapport
Try to connect with them with a conversation Important not to be judgmental
Don’t try to take over
Take stuff out of my own cupboard and take it over
Educate
Give very specific instructions Prioritize Action Responses- Interdisciplinary DSS referral APS referral Lifeline
Social Worker referral