APPENDIX B INTERVIEW GUIDE

The purpose of this interview is to learn about your experiences with elder clients who self-neglect. I am interested in your thoughts and ideas about self-neglect and especially in hearing about your experiences as a home health nurse assigned to care for clients that you felt were neglecting their needs. There are no right or wrong answers for the

questions that I will be asking you. Please think about your experiences with these

clients, how you felt, and any possible questions or concerns that you may have had when you encountered these clients. As you are answering the questions feel free to add any other information about your experiences as well.

During the interview I will be tape recording our discussion, and I will also be making a few notes on paper just to keep my thoughts organized and keep myself on track. If at any time you want to tell me something that you do not want recorded feel free to turn the tape recorder off (demonstrate how to turn recorder off).

Do you have any questions? OK. Well, let’s begin. How long have you been a home health nurse? In your _________ years/months as a home health nurse how many times have you encountered a client that you felt was self-neglecting?

Grand Tour Statement

Tell me about a time that you went into a client’s home to deliver care and felt like the client was self-neglecting.

1. Tell me about an experience that you had with a client(s) who you felt was self- neglecting.

 How would you describe their nutrition, environment, and hygiene?  Talk to me about their primary diagnosis and the purpose of your visit.  Describe any particular problems such as wounds, comorbidities, etc. that

may have impacted this client’s health.

 Tell me how this client came to be referred for home health services.  Describe how you felt the client(s) viewed themselves.

 Explain how this client(s) interacted with others.  Why did you identify what you saw as a problem?

 How did you decide the steps to take in providing care for this client? (which resources were needed, who to contact etc.)

2. You have told me about these specific characteristics that you noted in a client who you felt was self-neglecting. Tell me how your experience with this client resulted in your feeling that this client was self-neglecting.

 Describe for me what you think a typical picture of a client who self- neglects looks like.

 How do you think these characteristics combine to form a picture of self- neglect?

 You stated _____________ first. Tell me why that particular characteristic came to your mind first.

 Was there any particular characteristic or client behavior that concerned your more than others? Why?

3. After thinking more about this client that you have told me about, tell me what you used to help you make decisions about the care for this client?

 Are there any services or resources you found particularly helpful?  Are there any services or resources you wish you had at that time?

 Describe any workshops, seminars or formal education you may have had on self-neglect.

 During the care of this client did you contact any other disciplines, or services? Why or why not?

 If you contacted other disciplines or services for this client tell me about that conversation and the outcome.

 Was there anything that you found especially helpful in making decisions regarding the care of this client?

 Was there anything that you felt hindered your ability to make decisions or provide the care that this client needed?

4. You have told me your thoughts about the client’s nutrition, their hygiene and their living environment. How did what you observed in regard to those things fit with how the client interacted with you?

 Did the way the client carried on a conversation match what you initially thought when you observed the client and their surroundings? Why or why not?

 Do any questions arise when you think about the conversations you had with this client given what you observed about this client?

 Some professionals have stated they felt conflicted with questions of autonomy (protecting the patient’s wishes) and beneficence (doing what they felt was best for the client) when encountering clients who self- neglect because the client was able to carry on a meaningful conversation with them and was adamant that they could take care of themselves. Describe for me any conflicts that you may have felt in caring for this client.

5. Tell me about others who may have been involved with this client.

 Did your client talk about relationships with others? Tell me a bit more about that.

 What role(s) did these other individuals have with this client you have described?

 Describe any social activities or group involvement that this client discussed with you.

 Did you suggest any social activities for this client? If so, tell me about the client’s reaction to that suggestion.

6. What might have made a difference in your care decisions for this client? 7. We all have a sense of who we are as a person, a personal identity. Some have

stated that elders who self-neglect may be fearful and trying to keep others away from them, while others have stated that the elder who self-neglects is trying to maintain control of their life.

 What do you think about what the self-image of the client you have described to me, and possible factors that led them to have the behaviors that you have shared?

 How do you think the client’s behaviors surrounding nutrition impacted their personal identity?

 How do you think any disease processes or conditions impacted the client’s sense of who they are?

 Some have said that elders who self-neglect isolate themselves socially. Did you see this in the client you described for me and if so, can you describe for me how you think that impacted your client.

8. Self-neglect has been described as a perplexing phenomenon, and one that presents a picture that you never forget. Now that you have encountered self- neglect in your practice as a nurse are there any changes in how you practice

9. If I asked you to define elder self-neglect for me what would your response be? 10. Is there anything that you wish you had known about self-neglect before

encountering a client exhibiting this phenomenon?

11. Now that you have some nursing experience with elder self-neglect can you describe for me anything you might do differently if you ever encounter another case of self-neglect.

12. If you were explaining elder self-neglect to a brand new home health nurse what would you tell them?

APPENDIX C